Impact of the CFDT Perinatal Palliative Care and Bereavement Program: A Provider/Parent Panel

Impact of the CFDT Perinatal Palliative Care and Bereavement Program

Female Speaker: All right, so, we're going to go ahead and start our panel and review our Palliative Care and Bereavement Program. First of all, I would like to thank our three families who are with us. This is not easy, and we understand and recognize that, and we really appreciate your bravery and your honesty and your openness about going through this, so thank you in advance. I'm going to turn it over to Joanna who is going to lead us through the panel.

Joanna: Thank you everyone for being here. We're going to begin with going over the overall definition of the program and what perinatal palliative care, the definition of that. Dr. Munson.

Dr. Munson: Hi good afternoon, very nice to see all of you. So it’s a little difficult to exactly define perinatal palliative care, but the point is to take the principles of palliative care, which involves the focus on anticipating symptoms and managing those symptoms, but also a real focus on family. And because the principals can be applied to the situation where a woman has learned that her fetus has a life-threatening disease, this subspecialty kind of grew out of its own. There was kind of this grass roots movement of a perceived need, and gradually different groups of people — OBs, neonatologists, nurse midwives, hospice nurses — a variety of people kind of gradually began to work their craft on their own. But slowly it grew into becoming more and more formalized programs.

So you can see here that initially there was just really focus on anticipating symptoms, but over time it’s become a much more comprehensive model. And at CHOP, we've really taken that very seriously, and over the years have very conscientiously and formally added different parts of our program to make sure that we can address the whole family, all of the needs that might surround supporting a family when they deliver a baby who may not survive.

Joanna: I'd like to turn the panel over to Kendall and Michael Heath who will be talking and sharing their experience in honor of their son, Paul.

Kendall Heath: I'm Kendall Heath and this is my husband Michael Heath. And I was, it was four years ago, I was 18 weeks into my pregnancy when we got a call that something was wrong. And we live in Washington, DC, and our doctors weren't quite sure what it was. Maybe it’s Fryns syndrome, maybe it’s something else, but regardless the problems that our baby had were so severe that we were very early on encouraged to terminate. And we weren’t even through a full day of testing at a local hospital before we were asked if we even wanted to continue. The geneticist just assumed we couldn't handle hearing anymore.

But that is not us, and that was not what we wanted for our child, so we sought many second opinions and that's how we ended up at CHOP.

And at the end of the day, our son's diagnosis of Simpson-Golabi-Renal syndrome was fatal and nothing could save him. But as we navigated, preparing for his birth and his death and the challenges that we'd face afterwards, we were on the receiving end of two very different types of care. Some that caused us extensive stress and made a horrible situation even worse, but other care that completely exceeded our expectations and changed our lives for the better.

So our son, Paul Evans Heath, was born on May 18, 2011, and he lived for 37 minutes, far longer than doctors or we even expected. And the short time we had with him was so special, but it was time that Mike and I really had to fight for. We didn't deliver at CHOP. We were at a hospital in DC, and we were left to make really just unimaginable decisions and heartbreaking arrangements very much on our own. Mike will tell you more about that.

Michael Heath: As Kendall mentioned, we had to fight to get our 37 minutes with our son. That fight entailed over a month of research, medical appointments, spiritual counseling, and perhaps hardest of all, preparing ourselves to say goodbye to a child who may not live. The team at CHOP helped us get those 37 minutes. Their care, guidance and support as well as the care and support of our families, some of whom are in attendance today, got us precious time with our son.

You know there's a huge difference between the standard of care we received at CHOP and what we experienced at Washington Hospital Center, where Paul was born. My goal today is not to demonize Washington Hospital Center or say that they're horrible people; they're not. They tried to do the best they could in a very difficult situation.

My goal today is to identify key gaps in care that put undue stress on the patient and the staff at Washington Hospital Center so that you, the medical professionals in this room, will have a better understanding of what families facing some of the challenges we are, especially those with perinatal loss are going through.

These gaps during delivery and postpartum care were due largely to a lack of understanding on the part of the hospital staff of our situation and what we were trying to do; what we were trying to accomplish with our birth plan. That resulted in Kendall and I having to coordinate our own care in a time when we were trying to focus on our son.

So, after arriving at the hospital and discussing our birth plan with the hospital staff, there are still several areas of confusion, and we were very, very clear. Let me start off by saying that we were very, very clear with the staff, exactly what we were trying to do. We knew that our son was not going to live. We knew this was a terminal diagnosis. We knew that we were trying to get as much time as we possibly could with him. And we wanted to remember that time in a way that when we looked back at this chapter in our life down the road, we knew that we had done the right thing.

So, we were offered the opportunity by the staff to stop Paul's heart prior to delivery. Even though, as I've mentioned, we made it very clear that we wanted a live birth if possible. And that we had gone through this entire experience, a month of research, going up and down between Washington and Philadelphia and  Connecticut, so that we could get a chance to meet our son.

The nurse who had been with us for most of the day had done a fantastic job. She was great, she was caring for Kendall; she got it. However, about two hours prior to Paul's birth, she was relieved on the shift change. Her replacement wasn't properly briefed and didn't understand what we were trying to do.

And, I talked about undue stress on the staff, well when Paul was with us during that 37 minutes, she had to leave the room, and we could hear her breaking down in the hallway in tears. So again it’s not just on us, the family, but it’s on the caregivers as well; the impact of these little things, again just not being briefed properly at what we were trying to do.

I mean she actually thought that we should have taken Paul to the NICU. After we had known that Paul wasn't going to make it. And we knew after talking to Dr. Munson and Dr. Kellick at CHOP, that trip to the NICU was just going to be more pain for our son and still a terminal diagnosis.

The funeral home recommended by the hospital had no experience with neonatal death. Just hours before Paul was born they tried to charge me for an adult casket, an adult funeral services, they thought it was grandpa and they thought grandpa had just died. They also told me that I would have to fight with the district to get permits to move Paul's body once he had passed. And that by the way, if that wasn't enough, the funeral director, because this wasn't even the funeral director I was talking to, would like to call me back sometime later that afternoon to discuss the details.

You know, our faith is something that is really important to us. It got us through this and we were — it was very important to us to have Paul baptized. We requested a chaplain, several times, hours prior to Paul's birth. In fact I went down to the Chaplain's Office I think about four times. The chaplain arrived about two hours after Paul had died.

And then finally, there was no consideration for any emotional impact in certain actions either. This part was probably one of the toughest that Kendall and I had to deal with. After Paul had passed, they prepared his body right in front of us. Which means they took him, and they put him in a plastic bag and duct taped the bag. Literally in eyesight of myself, but also in earshot of Kendall.

There was also no real postpartum plan. You know like I said, we were coordinating our own care with the hospital. So you know I'm not a medical professional, that's what you guys do. Not that smart. But I'll tell you, you know I should – one thing we didn't think about was what happens after Paul is gone and we're focusing care on Kendall.

You know, she was told that once she felt well enough that she could leave, even though she had been heavily medicated for several hours, including epidural medication, as well as medication to induce labor. To say nothing of the emotional trauma that she had just endured.

Her mother and I convinced her that she should try and take a shower at least before we attempted to go home. Kendall ended up after four steps of getting out of bed collapsing on the nurse, in the bathroom and hemorrhaging all over the bathroom floor. The nurse was injured after she hurt herself on the toilet.

Kendall: After I fell on her. So it was probably my fault too; it was.

Michael: The situation had put both Kendall and the nurse in unnecessary risk, and something we could have avoided if we had clear guidance to what we were going to do after Paul had left us. You know after Kendall had fallen, the doctors finally recommended that she stay overnight. However, we were informed that we would have to leave the maternity ward, because the maternity floor was reserved for mothers with children. So within two hours after delivery and losing Paul, we were shipped to a room somewhere in the hospital, again because we didn't have a child.

We received a hospital bill for nursery services about two weeks after Paul had died. Obviously nursery services we never had to use. And Kendall had to fight with the hospital and the insurance company to get those charges reversed.

Social worker interaction was something that was missing in our case. It was minimal at best. And it was not geared towards addressing the needs of a family facing the loss of a newborn. We basically got a folder with some phone numbers and some pamphlets, and Kendall was left on her own to find a mental healthcare provider and the follow-up.

Now, I say all this, and again I'm not trying to demonize folks at Washington Hospital Center, they're trying to do their best. There are things that they did right. Including they put us into the private area of the delivery ward. They gave us a recording of Paul's fetal heartbeat that we could take with us. However, with that said, it’s clear that the staff at Washington Hospital Center was not prepared for us and what we were trying to accomplish, and that is to have the most time with our son and to remember him in the best way possible.

Instead, my memories of that day are soured by what Washington Hospital Center did not do, and how hard we had to fight for what we wanted. They did not have protocols designed to deal with the loss of an infant with a fetal condition. And more importantly, how to care for that family in the wake of the loss.

Kendall: So as Mike said, it was all just so rushed, and that was, you know, almost the sooner we got out of there the better for everybody. We just — had we been offered the time and the space to be with our son, we would have done so many things differently. We would have had every single member of our family there to meet our son and to get to say goodbye.

And for us, our journey did not end after Paul died. A week later, the day of his funeral actually, we get a phone call from the geneticist, because I had had to do more testing, and it turned out I was a carrier of Simpson-Golabi-Renal syndrome. So on the day that we bury our son, we find out every pregnancy going forward could end up like this.

So, that's when CHOP really came in and just stepped in and just saved us. And the advice and the support we received from one particular doctor, Dr. Kellick, who's speaking upstairs right now, I think, it just made all the difference, and it’s part of the reason we're here today.

So she guided us through really what our diagnosis meant, testing we would have to receive in the future. My whole family would have to be tested. And over dozens of phone calls and hours of talking, she just was with us every step of the way. And she was our first call when I got pregnant almost a year later. And was Mike's first call when I was miscarrying that pregnancy, and she helped us figure out genetic testing after that.

Again, when I got pregnant again she was our first call, and she told us where to go for CVS testing and just was with us every step. And I think her shrieks of joy when we told her this baby was healthy and OK, rivaled that of our families when we told them our news. And she was, you know, it was OK you're coming up to CHOP, you're going to get the anatomy scan with me, I want to make sure this baby's OK.

And in the same room where she had told us, you know, Paul wouldn't make it, we got to talk to her and hear that our son, his little brother, would. So for all that — all that compassion and the medical care and the referrals and the advice, I never once saw a hospital bill. She was just there, and we had her cellphone, and she had mine, and we would text and email. And it was just, it made the biggest difference in our lives.

And so when looking back at kind of these parallel opposite types of care we got, we really wanted to make sure that while families avoided some of the more traumatic elements we had to go through, they also get this amazing level of support, and that it could be like a standard of care, and this follow-up. Because had we been left to our own devices afterwards, I don't know what our family would look like today.

Because her support, the support we got from CHOP had a huge role in us having a 2-year-old son who's making noise out there, and a little girl on the way. And so when our family decided we wanted to give back to CHOP, it was really about something that would last and help other families.

So, this incredible team will tell you more about everything that they're doing. But we've just been so impressed how Joanna, and Laurie, and Dr. Munson and Julie have just taken our ideas and our experiences and our thoughts and just translated it into this living, breathing program that is having so many other families — helping so many other families today.

And knowing that other families are getting the help they need during this time, it’s such a gift to us because it’s the way our son gets to live on. So thank you to them for all that they do, and thank you to you for being here, and even if you just take our bad stories and tell your hospitals, let's not do that, then it’s a step in the right direction, because every family who gets this kind of news deserves the type of care that CHOP is providing now. So thank you.

Joanna: Thank you Kendall and Michael. Dr. Moldenhauer will begin the discussion from the staff about our program and what it looks like to date.

Dr. Moldenhauer: So, the program the CFDT is really a multidisciplinary collaboration that involves docs from the neonatal side, the OB and MFM side, as well as the prenatal care providers, Laura who comes in and provides spiritual support, our social workers, Liz who helps with siblings and making memories, and Joanna who provides longer-term support. So this is not just in the immediate period where we're really dropping the news, but throughout the pregnancy, around the time of delivery and longer term.

My role is somewhat of an unfortunate one because I'm the person that sits down in that consult room, and I review the images with the couples, and we talk about what those images could mean, and what this could look like in six months, in two years, in five years, in 10 years, and what the diagnosis has an implication for the family.

Many times we don't have a definitive diagnosis, and so we're having this discussion about all these terrible, horrible things, and we may not know for sure that they are all these terrible, horrible things. And so, part of the discussion is going through the differential diagnosis and what it could mean, and then what are our next steps, and how do we determine exactly what the final diagnosis is. And that way we can only talk about what the real outcome is going to be once we for sure know what that is.

And so, that might mean having a discussion about having an amniocentesis that a couple might not have planned on having, or additional imaging studies, or taking further steps.

And then once we know a diagnosis, or even if the imaging gives us an idea that this is a condition that's going to have a potentially fetal lethal outcome, or an immediate neonatal lethal outcome, or a very poor prognosis, we then have to start having a very rough and tough discussion about what are the options available.

So, depending on gestational age, one of those options could be termination. One of those options could be continuation with all heroic measures. Or one of those options could be palliative care or comfort care for the neonate.

When you have this discussion, you have now kind of stepped across the line with couples that you're no longer having a frank discussion about medical care. You have now taken them to a very vulnerable place, and you're having a very gut wrenching, raw discussion about what are your objectives. Are your objectives to potentially meet your baby alive? Are your objectives that you're going to let nature takes its course? Things change and get raw very quickly, and so you have to be open, you have to be honest, you have to have some kind of understanding what it’s like to sit across the table and hear that news.

And so, part of that is the discussion about the obstetrical care issues and maternal health and options related to that. And then taking the next steps once a family, or couple, has decided the direction that they want to head, helping them ultimately get to where they need to go.

Dr. Munson: Which often means that then I meet them. So this program started originally with myself and a social worker kind of just thinking we should do this better. And luckily we work in a place that values ideas that work and builds on them over time. And so now, we have this incredibly robust multidisciplinary team.

And so, my role has become more and more specific, but just as Dr. Moldenhauer shared, I view my job to describe and kind of lay out the possible paths that a baby might follow once they were born, and to try to share openly and honestly what intensive care might look like, what a trial of intensive care might look like, and what a comfort care plan might look like.

And again, trying to titrate the different degrees of uncertainty as to how sure are we of the diagnosis? And even if we are sure of the diagnosis, how sure are we of those different outcomes? And then really importantly to continue to elicit from the family their values, their hopes, their fears, and try to guide them to help them match what their values are with the available interventions.

And so, it’s a real give and take. It’s a dance. It’s you tell me about your family and yourselves, tell me your hopes, tell me your fears; well, let me tell you how I interpret that and what the medical choices are. And so it’s really that kind of give and take where, again, honesty is really important, humility is really important, this is what I know, this is what I don’t know.

And then really making it a safe environment to talk about things that no family should have to talk about. And that is the art of this, as just being able to say, this is going to be really hard, but these are the things we need to talk about. And being able to put it on the table in a compassionate way, and elicit from the family their viewpoints that can help them shape a plan for the baby.

Jennifer: My name's Jennifer, I'm one of three social workers at CHOP who work with CFDT, and today I'm going to highlight the role of the social worker on the palliative care, prenatal palliative care team. And I want to say I'm sorry you didn't get to meet an effective social worker in your experience.

The social workers in CFDT meet with families, where their real lives, full of all their inherent complexities intersect with the traumatic medical crisis of a poor prenatal diagnosis. Much like the South Street Bridge, or the Platt Bridge, or the Ben Franklin, you may have taken to get here, social workers in CFDT function as an essential bridge in this critical life intersection, providing support, direction and access to invaluable resources at a time of great need for families.

In fact, prenatal social workers meet with every family in CFDT, and we follow her all the way through pregnancy and delivery. We're an important part of every family's medical journey in the center.

We get to know the patient and her family, and we help them to navigate through the foreign medical world that they never expected to be a part of.

As an essential bridge, we provide strength to the family and share the weight of the baby's diagnosis. We guide the family through the emotional and practical plans for delivery. And we connect them with resources to help them with the grieving process. And today, I'll touch briefly on all three of those roles for the social worker.

First, sharing the weight. The social worker serves as a bridge to help the family bear the emotional weight of living with the baby's diagnosis. We partner with the medical team and with the palliative care team when they meet the patient and the family to assess their understanding of the implications of the baby's diagnosis, to clarify important information, and to talk with the family about what happens next.

Social work also helps the family to identify the family's own ability to bear the burden, to bear the weight of the baby's diagnosis. And to identify critical areas where families may need additional support.

Have there been other deaths in the family? Have there been other loss experiences that will make this intensify a family's reaction in this experience? Who's been helpful to them? Who are what have been helpful to them in other crises? Are there additional stressful events going on for the family at the same time? Once we have a good sense of these issues, we partner closely with the medical team and the palliative care team to address specific needs.

Second: guiding the family, the social worker helps develop emotional and practical plans for delivery and gives the family direction to bridge the gap between the sad reality of the present situation and what life might be like on the other side of this unimaginable experience.

This begins with actively listening to the patient's story, hearing the hopes they had for this pregnancy and for this baby. It means helping to refrain their role as parents, and identifying what they can do during the pregnancy and during what may be a very short time with their baby. It means reassuring them that they'll always be parents to this baby.

At this time the social worker encourages the family to start thinking about the memories they want to have; the story they'll want to tell their families, their other children, and even what to tell a surviving twin at some point in the future. We also ask practical questions, like what do you … who do you want to have with you for appointments and for delivery? Who can help you with the other children? What do you plan to tell people at work? And how can we help you with your plans for a funeral?

The social worker begins guiding these discussions prenatally, in fact even discussing funeral planning early on can be very helpful. For some families this may feel like the only area where they have some control, and it can be a help with effective coping in the long run.

Third: social workers connect with resources. We bridge access to resources for ongoing support beyond the Hospital. Over many years and experiences, we've developed a network of professional connections, professional relationships in the community to help families beyond their tragic experience. We connect families to these resources to assist them with arranging the baby's funeral. We continue to talk to patients and families about normal grief reaction and coping strategies at home. And we refer them to online and group bereavement support that can provide additional tools and connections to help them during this critical transition period.

So I would, as you consider your own practice, I would encourage you to partner with the social workers you have available to you to provide extra support to these families who may be facing the unthinkable; a life-limiting diagnosis for their baby.

As an essential bridge in palliative care, we share the weight of the diagnosis, we guide the family with practical and emotional plans, and we connect them with invaluable resources at the time of great need.

We're present for both families and staff in these challenging and emotionally charged situations as we work together to help a family begin to grieve and begin their journey to healing.

Laura Palmer: Good afternoon, I'm Laura Palmer, I'm the Chaplain for the SDU. I also work as the Chaplain in oncology. The work in the SDU is tremendously rich. I feel very often that I am on very deep and profound sacred ground as people wrestle with these hard and difficult and sometimes very gratifying moments in their lives.

I meet with the family very often prenatally, sometimes not, sometimes there's a crisis and I'm called in. In getting to know the family, I listen. I define often my work as a ministry of presence; it’s nonjudgmental. I listen deeply. I bring my own deep faith but an open heart, and my own sense of trust that the patients and families in telling their story will either know where they want to go, or will somehow lead me where they best need to be supported.

I often am asked to help families process their feelings of guilt, shame, doubt, confusion, sometimes anger that follow in the wake of a diagnosis, and their own religious beliefs. Of course there are also very many joyful times in the SDU, but those are much easier to navigate, obviously.

People will sometimes say to a chaplain things that they won't say to the social worker or their physician. I recently had a mom whose baby is going to be here for a while, and she asked me if I would bless the baby. Her husband was present when she asked me to do that. I said of course. We made a time, 45 minutes later I get a call on my cell phone, I didn't want my husband to hear me say this because he would be upset with me, but I don't want to be there when you bless the baby because ever since we married there have been so many problems in my life, and I feel that I'm somehow under a black cloud, and I don't want anything to transfer from me, from my bad karma at this moment onto my baby.

So, that people often feel deep conflict with what is sometimes a very clear cut medical decision in twin to twin transfusion syndrome, when the weaker baby has to be terminated to save the life of the stronger twin. It seems to most people like a very obvious choice, but it is very often, for the mother, profoundly difficult. Will God forgive me for what I am about to do? I hear that often. And that takes time. That takes listening. That takes prayer.

But I think it is an enormous contribution that we give to our families just by bearing witness to it, by listening, and by trying to help offer other alternative thoughts.

We offer, of course, the sacramental rituals, the baptisms. We have had priests actually in the OR to baptize the baby at birth for Catholic families. Sometimes I'm there to baptize the baby when it looks like it may be precarious in the delivery room. Other times, we will do baptisms when more family can be present, the siblings and the grandparents.

We also have started offering certificates of blessing. This came up quite organically. A mom who had triplets, one of the triplets died in utero, two were born. They asked me to baptize the surviving, the twins, and as I was preparing that, I realized that what about the third who obviously had never been viable. So I thought well, why don’t we have a certificate of blessing?

So as we … before we blessed the surviving twins, I asked, you can ask a blessing on anything. So I asked that the spirit of this child be blessed by God in this moment. And then I gave the parents, we have a certificate of baptism on very nice parchment paper, I just made a certificate of blessing, with the name they would have given their daughter.

And it was so deeply meaningful for them to have her acknowledged that now I will offer families a certificate of blessing if the baby dies before it’s born, or never was viable. And that is just something tangible that has become so important to families. And I think it also underscores what is part of the soul of our unit, which is just valuing every life and letting families have time with their child. Baby can stay in the room as long as the mother would like to have — the mother and father would like to have the baby there.

Another ritual that we offer is would you like to pray before you say goodbye to the baby for the last time. That's just a way of making a moment that is very difficult sacred.

We also, as the Chaplain, I can coordinate other spiritual support if a family would like to have a Rabbi or an Imam come in. We can do that as well. If their local priest wants to come, again that's another — we are here to support people in any way that they may define it.

And then, last but by no means least, as a Chaplain I try to support the staff in situations which are just challenging. And sometimes so very, very hard.

Liz: So my name is Liz. I am the Child Life Specialist in the center. My role is a little bit twofold. The first piece is sibling support. So I work with our families prenatally, and it’s really partnering with parents to find the best plan for their other children, and what that really means it’s a lot of language. I'm actually going to make this short because I feel like these guys will describe my role.

So a large piece of it is language; how do we talk about death and the diagnosis? And then what's our plan for the sibling meeting their, meeting the baby. And then it’s also a lot of support after delivery. So being present with the family in that time and allowing the sibling to both meet the baby and well as spend time with and create memories. And then it’s resources and education for parents as well, to continue supporting their children after they leave the Hospital.

And the second piece, is whether families have another child or not, it’s memory making, so it’s really supporting the parents in that process.

These are the items that we offer, but really it’s all about the family. And if some families what to get very involved and spend hours making mementoes, some just want me to make them for them, and it’s really all about what they need in that space and time, and spending time with their baby and saying goodbye to their baby.

Joanna: And my role as a clinical psychologist, and also being trained as a birth doula, I'm able to really help families support development of their birth plan. And this is something that I discussed in my previous talk, it’s a therapeutic process. It’s more than just a piece of paper that says these are what the family wants, it’s a process of discussion every time they come for prenatal care. We meet and we talk about their plan. We know that the more we talk about things that are difficult, the less difficult it can become and the more prepared you feel when you're faced with that experience.

So talking about death before death happens is extremely important to get families in the mindset to accept what's coming. And doing it in a very gentle process, working with families at their pace. And that takes a lot of time and a lot of preparation, so that at the time of birth, it’s about being parents and cherishing that moment that they have, however long it may be with their little one. And not thinking about, oh yeah I have to remember I want the chaplain, or oh I have to remember that I need to call the nurse to make sure my mom's here.

That's already done. The path is laid before the babies are born, and so families don't need to think about anything other than getting through labor, delivery, and that process of spending time. We develop and organize their wishes into a comprehensive plan that is put into the mother's medical record so that it’s accessible to all of our teams, obstetrics teams and our neonatal team that's going to be attending to the mother as well as the baby. Because if she comes in the middle of the night, I may not be there, our team may not be there, so it’s important that the team knows what we talked about ahead of time.

It’s also that balance of celebrating the life that they have. This baby is with them; alive, moving, growing, and enjoying that time with their baby. And also preparing to say goodbye. And that's a very important part of the process of planning. And really helping families remember to take care of themselves throughout this process. Knowing that in developing strategies to prevent any struggles they may have in the postpartum, when it comes to depression, anxiety or complicated grief.

All along the way, at the day and time of delivery, coordinating those services so things are smooth from the time of prenatal care, communicating that with our inpatient team, so that they're ready to receive. And also supporting the families each day they're inpatient, checking in with them, talking about how they're doing, making sure they're doing OK, despite what they've gone through, and then connecting them with resources as they return back to their communities.

So, what I want to share with you is looking at what we've been doing over the past two or three years we've been able to collect some data now. And the research is very minimal out there in the community of understanding how to do this well. And so we learn from each family experience, and we take that with us to the next.

So we began tracking families and families who've experienced palliative care support in 2012. We had four families that we supported. And you can see the trajectory going upwards to last year having 35 families that came through our department and had palliative care consultations with our team, and 45 of those families were able to deliver with us in the SDU.

Another very important part of my role is coordinating the outreach and bereavement follow-up that occurs, not only through research but tangible outreach. So throughout the year, families are tracked of the time of their loss and then provided bereavement outreach cards at three separate time points throughout that year.

Some families may not be ready to engage with ongoing support at three months, may not be ready yet to receive six months, but maybe at a year we hear back from families and say now we're ready to talk and get connected with a therapist. Or now we're ready to come back and get more information from your team. And so these numbers to date, since September of 2012 and starting this tracking system we have sent over 780 cards, handwritten cards, to families experiencing grief. We also provide strategic phone calls, emails and distribution of local resources to families when they recontact us.

And what we do after a year is we transition our families who've experienced loss to our CHOP-wide bereavement program, called Even Star, and families are invited to come back to our annual memorial services that are held three times a year.

You've heard from our team, you've heard from the staff about the process, and now I'd like to turn the floor over to the families to share their experience with our program.

We're first going to hear from Robin Proctor and Aaron Campbell, they're going to share their experience in honor of their daughter Edi.

Robin:  OK, I’m Robin. Our first experience with CHOP CFDT was during our pregnancy with our second child, Edie. I had just had a routine 20-week ultrasound elsewhere, which was closer to 22 weeks when I actually ended up getting it done. And it showed that our daughter had some abnormalities. I believe that was the term.

The physician who performed the ultrasound really was not at all compassionate when conveying the results, and actually before he gave us the results, he had a fellow and he had his fellow actually perform a trans-vaginal ultrasound to check the competency of my cervix, which was totally unnecessary because he probably knew at the time that I wasn’t going to make it to delivery.

Anyway, so and by the time he actually ended up giving us our results, I was still gowned and gelled up. He didn’t — I wasn’t even able to get dressed. So that was a bit of a challenge. It was not enjoyable at all.

At any rate, so we had the amnio three days later and it was the same physician, who kind of suspected Trisomy 13 at the time, really was heavily impressing upon us this need to make a decision to continue or terminate, given my gestational age. And again not much in the way of compassion at that conversation.

So fortunately, the genetics counselor there referred us to CHOP’s CFDT for what we thought would be further testing. We were kind of unclear, but anyway. We had an appointment the next … I think it was within the next few days.

So, this is our patient appointment schedule. It’s — sorry the print’s not great. At any rate, in retrospect, I think of that initial interaction at the CFDT with fondness of all things. Aaron and I were totally overwhelmed, having gone from expectations of having a normal pregnancy to one that was not likely to result in the live born child in a matter of a few days.

But from the moment we started at the CDT, we were met with compassion at every encounter we had, from the people who checked us in to the physician who performed out fetal echo. And that’s kind of where the fondness comes into play. They get it here.

Our first encounter with Dr. Moldenhauer for example should have just been totally awful, not because of — because of her personality, she’s actually, she’s quite lovely. But because actually as she was explaining it before because she’s tasked with telling us that our daughter’s chance of survival with Trisomy 13 was pretty much nonexistent. But despite that, I mean it was actually a really great visit. She had such a patient, friendly, artistic way of explaining the genetics and anomalies of Trisomy 13 and spina bifida. Our daughter had a spina bifida as well.

And she made it specific to our daughter, which was great. And then once she knew we were comfortable with it, she infused humor which we absolutely appreciated.

And we had a similar experience when we first met with Joanna and Dr. Munson, that same day. We met in a conference room, we sat around a table, there was Kleenex; Joanna was very good about that. And they laid out the, I mean exactly like they both said, they laid out the palliative care program, and they kind of laid the foundation for what would later become Edie’s birth. They were both incredibly open about birth scenarios for her, particularly in a situation with the likelihood of her, again being born alive was quite low, but they never ever made us feel like a live birth wasn’t a possibility. Seems that they kind of sensed a need for us, we needed hope, and they gave it to us, and it wasn’t false. But it kind of helped us certainly.

That same visit as well, they helped us come up with the words to tell our then 3-year-old son, Felix, about Edie. And when we asked about their thoughts on continuing our pregnancy versus terminating, Joanna in particular, she challenged us with this question of, do you want to make her a part of your family history? And we, that was kind of the main thing that we took home that day.

That and then the feeling of empowerment that they gave us, when faced with such totally helpless circumstances where we felt we had no power at all, they kind of assured us that we would be making the decisions in Edie’s care, and that they were kind of there to support us however we wanted to go.

So of course we left the CDFT that afternoon even more overwhelmed than when we got there. And we weren’t any closer to making a decision whether or not we were going to continue, nor whether we would continue at CHOP. But ultimately, fortunately, Aaron and I both individually, and collectively, decided that we were going to continue our pregnancy with Edie.

So then we told, actually that was … there you go. We then told Felix about Edie, and the wordage, again, something was wrong with her brain, we would probably not be able to bring her home. We talked about her and to her, and we kind of just tried to change the concept of her life. It was kind of more in terms of the pregnancy, make it about the present, not about the future, and just tried to cherish every day we had with her, so that’s the four of us.

So throughout this time, we kind of continued our appointments at the CFDT despite the fact that still we hadn’t decided if that was where we were going to deliver. But each time we had an appointment, we always met with a midwife and a nurse or a nurse practitioner I think, and with maternal fetal medicine, who always were very open to discuss the details of Edie’s intrauterine growth. They always did an ultrasound, which was great, so we got to see her.

Everyone was incredibly respectful and supportive of our decision and plan to try and meet her alive. We often saw Liz who always was focused on Felix. She gave us a ton of resources, books, I mean she was phenomenal. But we seemed to have spent most of the time with Joanna here, who painstakingly reviewed our birth plan, not — that’s not in a bad way. Painstakingly just because you know, I mean it’s awful but, anyway. So and this is really small print, so if you can see, or probably not, this was…

Aaron: It’s a plan, that’s the … It’s a plan, it was a plan.

Robin: But we revised this every time we came. And it was intricate decisions about Edie’s birth that we were making as a couple. And which involved things like where she was going to be delivered, who we wanted to be present on the day of delivery, when we wanted to hold her, if we wanted to bathe her, how we were going to dress her. If there was an option for her to go to the NICU if she were to be born alive. How potentially how that would work.

And then also about funeral homes, like make plans, because that’s something that we needed to do. And despite the gravity of these conversations, Joanna was always, always upfront about how we were each individually doing. She always, always acknowledged Aaron separate from me, which is, I have to say quite commendable, because often times in pregnancy it’s often about just about the mom, and not about the husband or partner.

And she always asked after our Felix. And she always made sure that we were eating and drinking and sleeping OK. Which was great. Yes, yes, I’m eating, I’m drinking, it’s all good, we’re all safe. But great.

And then she always really just checked in with us as a couple, just to kind of make sure we were surviving. So again we’re still kind of in this do we deliver at CHOP, do we not? We had a, we really liked our OB at our other institution, so we decided we would meet with MFM there, not the different place than where we had the ultrasound.

And so with our experience at CHOP, we kind of came armed, OK can we deliver if she doesn’t live? Can we keep her with us? Can we bring our son?All these questions. And we just, we didn’t have any … there was sort of no firm answer, it was all very vague. There was no definitive plan that could be set in place, and there was no guarantee that we could have the experience that we potentially could have at CHOP. So, and it was by no means empowering at all. I think we were really…

Aaron: Definitely no hope, well there was one doctor said now who — who told you that she might live? And so there was no, nothing for us to, well when we left there obviously we were kind of like OK that was an easy decision to make.  Because there was no compassion. So sorry…

Robin: That’s OK. So spoiler alert; we decided to go with CHOP. So right … a unique requirements of delivering a child with Trisomy13, this is what I said. So, and then we really wanted, as Joanna had said, we really wanted to make her a part of our history. And so the SDU was where we chose to go. We continued our biweekly visits. Felix actually came to the unit, met with Liz, she introduced him to the unit so that he’d kind of get the lay of the land, because he was … we wanted him to be there after Edie was born. Again continued to revise this birth plan in visits and also via email.

And we were kind of just checking off the things you need to do, and you know however, you can prepare for such an awful event, no matter how insurmountable a task it seems like it would be. So we were incredibly well supported.

Unfortunately meeting Edie alive was not meant to be for her family. She died in utero on a Tuesday and was Earth Day. We showed up at the SDU and staff knew and they were phenomenal, they were just so gracious and lovely and incredibly compassionate as we had kind of come to expect. This is Edie.

Aaron: As you can see Robin is … my notes are on construction paper. So I’m a little bit less…

Robin: Mine were typed.

Aaron: Organized. And is this on? Can you guys hear me all right? Great. So the one thing that I think you’re probably hearing a lot is the word compassion. And the importance of that to us and our family. And the other thing that Robin just mentioned that Joanna had asked was, do we want to make her a part of our family history.

And so the second that we decided yes, she became our daughter. And I think for a dad in particular, I remember with Felix, you know you do, you’re reading the books and what’s happening now and what’s happening now, and it was totally different story. And even after our son was born, he wasn’t much of a personality, it’s just a little baby there, you know.

And so doing your best to make … it’s a weird thing because I think some people may say, well gosh it could be tortuous, you’re becoming attached to some person who’s not going to survive. And there are people, and were people who would tell us along the road that you’re crazy for doing it, why would you? And then we’d get to a place like CHOP who they say we’ll give you everything that you need to do that.

And it actually is a wonderful thing to see people who were there from the start. Laura was one of the first people we met, Dr. Slepian, I believe, c-section. I think you did. And the doctors down at the corner, and we got Dr. Munson down there who is Mr. Eye Contact. I remember it’s like oh God.

Robin: It’s true.

Aaron: I will not break eye contact.

Robin: Very intense.

Aaron: I will do my best. And he’s, just don’t get into a staring contest with him. And Julie is just someone I just want to have a beer with. It’s amazing though, you find people in this program that are top of their field, but are socially capable, which normally doesn’t happen. You meet doctors and they just, they don’t know how to talk to people. They know their field.

And these people are amazing people, and have done so much for us. So Liz, I think the hardest thing for me was dealing with our son Felix. I stay home part time, Robin’s our bread winner. And I tend to work, so Felix trying to talk to him about how his sister wasn’t going to come home, and that he had a sister, and making that decision that we were going to have him meet her, we needed to know how do we do that? How do we do that without screwing him up? We don’t want to find bodies in our attic, or our basement down the road.

And so Liz was wonderful and giving us language that he would understand and guiding us to these moments where that he to this day remembers. He says, “Don’t you remember how Edie was so cute. She was so adorable.”

And even you know trying to deal with us, which is great, Joanna was on our end of things and helping us deal with Felix’s disappointment and what that does to a parent and knowing that he’s not going to be able to see, he’s not going to have a sister.

And anyway, the staff had so much compassion for us, and helping not just when you think of healthcare as healing bodies and doing everything to keep a body healthy. But the importance of the healthiness of our souls and our minds, and our family. And I know and we’ve heard, and people have warned us that when these things happen families break apart. And with the help of this team, our family became stronger. And they became a part of our family because they are a part of her history, and she is a part of our family history.

And so, I am so grateful, and when they asked us if we thought why would we — we will do everything we can to help this program, help these people because they did so much for us, and we love them. And they did so much for our family. And the staff, from the nursing staff, there was not one person there who didn’t support us and treat our daughter — exactly what she was is our daughter. And so … and I do want to thank the other families here. And I…

Robin: Yes absolutely.

Aaron: And the Heath family for what they’ve done to help with this program. And to all of the staff and the staff that are here, it is wonderful to see you guys again, and thank you. And for the families that I know this is new, and I’m sorry for your, all of your losses. So…

Robin: And I think we just wanted to end by, so we’re a year out, we just passed our year anniversary, April 22nd. And we’re going to be OK. I don’t think we thought that at the time. This is, this was our — Edie’s birthday. Felix wanted to get a cake and this kid is all about chocolate, but for some reason he choose, this was the cake he wanted. He knew it, he’s like oh, I want the cake with the strawberries.

Aaron: Because Edie would like strawberries.

Robin: Because Edie would like strawberries. And so you know, I mean didn’t have a candle it was kind of just, but it was great. We just, we all kind of ate cake and talked about our daughter. And then we also planted a tree for her. There’s apparently a service that sends trees to people who have lost loved ones. And you can plant them. So one of my sisters send me one for, or sent us one for our birthday, or for Edie’s birthday. So we planted the tree, which was really great.

And then these are just things, you know, again Aaron mentioned Felix, and so he’s been a huge focus of this. And he’s going to be OK. So, on the left, well to our left, so it’s on your left too.

Aaron: So yeah.

Robin: Right. So that’s Felix spelling Edie’s name. He was kind of drawing, that was in the hospital when she was born. And then on the right, out of nowhere, this was probably a month ago maybe, he just kind of randomly drew this picture and that’s me with long red hair, and then a heart and then that’s Edie, and he just, he just was really excited about talking about his sister again. And it wasn’t sad. It was just kind there and it was great. So great. Because she will always be part of our family.

And even though she wasn’t born alive, so technically you know a miscarriage, because I was probably 36 weeks, but we don’t see her as that at all. I know none of our families do. And there’s, we just, we could never have done that without this program. So, and then the last thing we’ll just end, we planted these two trees on Mother’s Day for her as well. These sit in an arboretum that’s close to our house, and they’re magnolia trees. And it was incredibly wonderful to be able to do. And again, just we are so grateful for this program, it’s phenomenal, so thank you.

Joanna: Thank you. Thank you so much. We’re now going to hear from Shannon and Jason Newcomb, who’s going to share their experience in honor of their daughter Teagan.

Jason: Well I just wanted — are we on? Can you hear me? OK. I just want to thank Dr. Cole and Dr. Moldenhauer for inviting us to be here and speak about our experience at CHOP. My name is Jason and this is my wife Shannon. And you know Shannon’s going to get us started, and then I’ll end with a couple remaining thoughts.

Shannon: Hi, like Jason said, I’m Shannon. I think one of the reasons why he’s having me do most of the talking as everybody, most of the people that know me on this panel know I have the gift of gab. So, I will try not to get long winded, because I have a bad habit of doing that.

But our daughter, Teagan, was actually born on August 22nd of this past year of 2014. And right around this time last year, we were referred to CHOP. I was about 24 weeks pregnant and during the routine 20 week anatomy ultrasound scan and everything, we had received a call from my OBGYN over in South Jersey where we’re from, saying you know they saw an abnormality with her femur bones and possibly has hydronephrosis, which is an enlargement of the kidneys. So we were like, oh OK.

And then we were referred to the maternal fetal medicine over there. I had met with a genetic counselor because Jason with his job had a mandatory meeting that he could not miss at all because he works for the government. And I’m too self-sufficient and stubborn for my own good. We didn’t think it was a huge deal at the time, because our doctor was concerned, but nothing, you know, panic ridden, like oh OK we need to bring everybody. So I went to this appointment by myself.

And had another ultrasound, was talked to by a genetic counselor. And before even finding out anything about what Teagan had, she just looked me in the eye and said, is there anything that you know you would find out today that you’d want to terminate this pregnancy.

And that for me was one of the hardest moments because we hadn’t even known exactly what the diagnosis was, what was wrong, it wasn’t necessarily, OK here’s the plan, it’s do you want to terminate? And that was a very hard thing to hear, and then we were taken into a small — or I was taken into a small room after having another ultrasound. And the doctor from that particular hospital just looked me square in the eye and said, “this is not the baby that you’ve dreamed of.” And that for me was just a major blow. And I’m having a panic attack, I’m crying, that’s not the first thing that a mother wants to hear when you feel in your gut, this is more than just femur bones and kidneys here. I think we’re really like knee deep into something more serious.

And so, May 2nd of last year we were referred to CHOP by our hospital, after some more testing had been done. And very similar to what the other couples have shared, we were just welcomed so warmly. Everybody there, again bringing up that word compassion, they were just so compassionate. They walked us through, you know, the events of the day, everything from the ultrasound, the echocardiogram, an MRI.

Our daughter was very feisty, so I was very proud of her that day. I was not in that MRI for a long time because they had told me I guess how long is this going to be, I’ve never had — well it depends on the baby. Oh that’s wonderful, we’ll be here a while.

OK, but she was very well behaved and like they had also mentioned at the end of the day, we met with Dr. Moldenhauer for the first time. And we just love her to pieces. Love her, love her. And she’s just so fun, so fun loving, so down to earth. But hindsight, in retrospect, sometimes things are 20/20. I just remember the look that — I’m sorry I’m talking to you, but I’m looking at — that she gave me when she welcomed us into the conference room and sat us down that day, that first day at CHOP. Because we had brought our mothers this time, and Jason — one of Jason’s sisters with us. And we’re a very, very close-knit family.

I was never going to go to another appointment alone, and when it happened a month before, I’m like, OK, we’re bringing a bus when we come to the hospital, because I’m not going to be by myself. But just looking back, the look on Dr. Moldenhauer’s face, I felt this is another mom having to tell another mother, a father and family that something is seriously wrong here.

So she sat us down, she was warm, she took her time, and she, even went to the point of drawing out Teagan’s anatomy for us, showing us the ultrasounds that were done that day and told us, you know your daughter most likely has a lethal form of skeletal dysplasia and she may not make it long past birth.

So, of course we’re like oh what does that look like? Is that a couple months, is that days, is that years — and it was moments. She has a small chest cavity and she’s probably not going to survive. And some of the babies that what Teagan has, or had, sometimes don’t even make it to term.

So, one minute we’re sitting there, oh this is going to be a good day, we’re going to get answers. And not that it wasn’t a good day, but it was our whole world obviously came crashing down on us, because at the time I was a preschool teacher. So I was always around children. I was around kids from 6 weeks old to 6 years old. And finally after four years of trying to get pregnant, and ultimately Teagan was conceived via in vitro fertilization. And it was very successful. Oh, there I am big as a house.

It was very successful cycle. There were 12 embryos that were conceived and Teagan was the first one that was implanted. So it was quite the journey just to get pregnant. Working with kids all the time, and now this one, this little girl is ours. And we’re not going to be able to take her home. I finally have my baby. We finally have our little girl. And our time is so limited. Like everybody else has shared this. You can’t even put words, it’s just so overwhelming.

And so at that point we had decided you know, termination is not an option for us. And we believe in the sanctity of life. We believe that she is a gift from God, and we were going to fight for her. And they were completely supportive. Everybody up here that has been walking this with us was like OK. It wasn’t, well are you sure you want to do that? Well, these are your other options.

OK, if this is what you want to do, we’re going to fight for you and we’re going to fight for this baby. And so then began the process with Joanna two weeks later. And we were sat like everybody else in that conference room with everybody. And don’t laugh at me this is when it gets funny.

But the joke at CHOP is that I have a major crush on Dr. Munson. But not in a creepy kind of way. He’s just so, I just love you, that’s why he’s on the other end of the table. Every time I go there, what was the first question? Where’s Dr. Munson? I have to see Dr. Munson. He’s just so lovely.  So, but in all seriousness like the first…

Jason: Oh?

Joanna: She has a crush on you.

Shannon: I do. Every — see men crushes they’re real. But I just remember the first time we met him, of course he’s kind, and of course he’s compassionate. He’s the best at what he does. But one of the first things he said when he introduced us, was, what’s your daughter’s name? You don’t get that everywhere you go. It was OK, we got to treat this skeletal dysplasia, but he was just so kind and soft. And he asked, what’s her name? And I said we’re naming her Teagan Joy. Teagan means beautiful and Joy is just that, joy for the joy that she had given us.

And he goes, OK. We’re going to fight for her. And he always called Teagan by her name. And that was something, it might seem very small, but it meant the world to us because he gave her an identity — I can’t talk today — he gave her an identity. And we never felt like, oh OK, we’re just another appointment today. You have to meet this person or that person, from any of them. It was Teagan and us as a family were the center of everybody’s world, the time we were at CHOP.

And they made us just feel so loved and supported. And so from that point out it was, OK, we’re going to have those biweekly meetings with Joanna. We’re going to go over all the fears, all the anxieties. We’re going to do that birth plan, we’re going to revise it every time that you come here. What is it that you guys want? They let us be the captains of the ship. It wasn’t, OK, well this is what we think you have to do, or you really should do this? It was, OK, here are the options, this is what this looks like. There were no gaps. There was no holes so to speak where, OK, well what are we going to do about this? What about that? Or we didn’t talk about that. Almost everything was talked about.

Everything from her diagnosis, which if I hadn’t mentioned already was campomelic skeletal dysplasia after some more testing had been done. And it affects 1 out of every 200,000 births; it’s extremely rare. And in our case after more testing had been done from another genetic counselor over at CHOP who was absolutely amazing compared to the experience I had had months prior, we are not carriers for it. It is autosomal dominant. And so it’s just amazing to us in a way that we have a better chance of being struck by lightning than this ever happening again.

So, out of 12 embryos that were conceived through IVF we got her. And I don’t think we could have loved her any more had everything been the “normal” pregnancy.

And so just having this time to really feel our emotions, and really be vulnerable, and that humility that everybody here brings, and that love that they bring. I mean, I always appreciated that Joanna always met us where we were in that moment, but she never, we never walked out of that room in that same place that we entered, it was OK, we have another piece of the puzzle. We have a different outlook on what does this look like. Because being a first-time mom, being first-time parents, my first pregnancy, I was scared to deliver like any first-time mom, but I was especially petrified to deliver because the last half of my pregnancy it wasn’t just oh we’re so excited to meet this little girl, of course we were, but it became a countdown to when we were going to have to say goodbye.

And it was just, OK, another day has gone by, she’s still here with us. She’s still here with us. But at the same time it was that’s one less day we’re going to have with her.

And so, finally my due date came, which was August 20th, and she was doing very well. I had tried the week before, even though I didn’t want to say goodbye, to go into natural labor. Did not work. So we had to give her an eviction notice, as I like to say. OK, Teagan today’s the day, and I think that must have been one of the hardest days for us. Leaving our home as three and knowing we were coming back as two. Knowing that those were, sorry, my last days with her being pregnant with her because I had a phenomenal pregnancy. Some people are going to want to slap me. I never got morning sickness, I never got nauseous, I had a beautiful pregnancy. A lot of the issues just aligned with what her, you know, abnormalities and disease was.

But the delivery process for what it was, I thought it went very well, it was a 33-hour induction. But she was a trooper, she was a fighter, and I just remember those nights, those two nights I was there before I had her just rubbing my belly and just having those moments with her, going OK girlfriend, that’s how I talked to her, it’s just you, me and God at this point. It’s just you and I. Those were those precious moments because I knew that they were, they were very quickly going to be gone.

And so, August 22nd at 3:41 p.m., after three-and-half hours of pushing, Teagan Joy had arrived. And so, as you can see from some of the pictures, the dresses that she was wearing, his sister who came to every single appointment with us, along with our moms, made them for us. We asked her, would you make some dresses? She’s an amazing seamstress. So, and she’s actually graduating nursing school in the next couple of weeks.

So, we put her in some dresses, we took some pictures, and that’s the amazing thing about this program, they didn’t hold anything back. They said if you want pictures taken, if you want your family there, whatever you want to do, because like they said, like she’s part of your family, she’s your daughter. This is part of your history. This is part of your story. Make it worth your while.

And so, as you can see we took many, many pictures of her. And even his sister made us, as a surprise, a little tiny robe for her to wear which was excellent because we didn’t know if we were going to have the option for heroic measures because there’s no cure for what she had. It was a small chest cavity. So it was a lot of unknowns until she was really born.

And so it was OK, we’ll have to kind of wait and see until she’s born. And when she was born we just didn’t know what to expect. And of course we’re bias, we’re her parents, but she was absolutely beautiful. We just fell in love. We fell in love with her the moment we found out we were pregnant with her, and we couldn’t love her any more than we do.

And I will never forget, this is my sappy moment, I’m sorry Dr. Moldenhauer, but I remember after having her and of course the NICU team is in there, Dr. Munson came in, I almost flew off the bed. I’m like Dr. Munson, you know. He’s like whoa, whoa you just had a baby, chill out, I’m coming to you. I’m like you know, showing off my kid and it was very lovely.

But, I remember Dr. Moldenhauer walked in, came up to me, and she wasn’t a doctor at that moment, she was another mother. She was another woman and just said congratulations. She’s beautiful. You did great. She made it. She made it to 40 weeks. She’s a fighter. And that’s what I needed to hear as a mom, because of all the uncertainties, now that it felt like, OK, the clock is ticking. When are we going to have to say goodbye.

Up until that moment it was, OK, all this planning, all of this time with Joanna, all this talking everything out, the anxieties, the fears, family dynamics, what does that look like? What was it like for me working with children knowing I wasn’t going to have mine the moment we had been waiting for? What was it like for Jason being the dad, having to watch his wife carry a baby that we know is not going to survive? Wanting to be a fixer, as men usually are, and there’s nothing we could fix.

So many things we planned out, but so much of it we were completely powerless to control. And so, that moment meant the world to me when Dr. Moldenhauer walked in, and I just felt just so loved by people that, at one point, were strangers, months before. But I mean we consider them family to us. Because it wasn’t always about we’re treating campomelic dysplasia, we’re treating this. It was no, it’s about Teagan Joy. It’s about you guys. It’s about the whole body; the mind, the soul, physical aspects. Yes, you did ask a lot how I was eating and sleeping. And every time, I’m like I’m going, I’m fine, I’m fine. And then Joanna would lovingly say, “fine is not a feeling word. I need some feeling words.” Right, what’s that about?

I’m like well it is for me today. So that didn’t work out so well. Within an hour I had to pull out some feeling words. This is really hard, no I need more than hard. Come on Joanna, stop it. But that’s the beauty of this program. Like I said, she’s a pusher in the best way possible. Now I love it, I love that you’re a pusher, we need that.

She made reality a reality, but they always left us feeling that fondness, that feeling of hope. And I know that’s CHOP’s slogan right now, that hope lives here. It’s more than just a slogan for us, it’s reality. Hope is not just something you do, it’s not just something that we feel or being hopeful. Hope comes in the form of a person for us. Each one of these people that have been part of our journey, part of our story, they provide hope because we know that they care. We know that they love us. And more importantly, they loved our daughter, they loved our daughter enough to get right there on the front lines and fight when other people couldn’t.

And we learned very quickly, especially in our personal lives with family, friends, different dynamics, whatever, what different people’s gifts were. Some people have the gift to be very kind and compassionate, and some people, I’m sure I don’t stand alone when I say this, some people just really just, don’t know, what to say to the point where they just say harsh things, like, well at least you know she’s going to die.

OK, that doesn’t make hurt any less, and it’s really hard when you’re pregnant and you know, yes, my baby’s going to die, like I had said. My time is so limited with her. What makes that any easier?

And then there’s some people like the ones up here, just you can do this, she was saying that all the time. You can do this. You’re going to be OK. And I’m like, what do you mean we’re going to be OK? She’s like trust me, you’re going to be OK. I’m like all right. I’m going to be OK.

So, after we had had her and she was born alive thankfully, because we didn’t know how long we were going to have with Teagan, OK is it going to be five minutes, is it going to be an hour. Part of our birth plan was that we were going to be the only ones, at least with our family, with her. Her time here. And I remember very much through the process they said, you know this is your birth plan. That’s all it is, is a plan. If anything changes, you want to change anything, if you’re in that delivery room and you’re like, you know what I want heroic measures done, we’re in it, we’re going to do it. It wasn’t like, you know, you’re signing this dotted line and it’s so final. There was no finality in that. It was, there’s so much flexibility because she’s your child.

And I remember, I think it was about three-and-a-half hours or so after she was born, our pastor had come, our family was waiting in the waiting room chomping at the bit, poor Joanna’s running back and forth. Shannon are you OK? Explore your daughter. I got to go show some pictures. Like for — I mean I’m still laughing at that. I felt so bad.

But, I remember looking at Jason and just starting to cry and I just felt so convicted, our family needed to meet this baby. I wanted them to have that connection with her, not knowing what was coming next, how much we had. And so, lovingly she brought them one by one, first were the grandparents, and Jason’s the oldest of five, so, I mean we have a pretty big immediate family.

And our family came in the room, they loved on her, they kissed her, they held her, they sung to her, we were singing to her. Obviously we had pictures done. Sung happy birthday to her. And then she’s passed back to me after everybody had her, and I could feel that something wasn’t right. And she just felt differently. And we knew the time was coming near when we were going to have to say goodbye.

So, I was holding her, the people from the NICU came in, the nurse came in, checked her heart, and it was a matter of moments. And it was one of the most beautiful moments of our entire life thus far to be laying there with your whole entire family, the people that love you and your daughter the most, there to say goodbye. And I’m so glad I hijacked my own birth plan because I wouldn’t trade that moment for the world. Looking back we have absolutely no regrets. No regrets on anything that had happened, because they let us steer that ship. They let us do what we felt we needed to do as her mother and father.

And so even after, even after she passed, it didn’t have to feel like it was over. It wasn’t, OK, well she’s gone, you guys we have to take her back. We have to take her away. We got to spend another almost 48 hours with her in the room with us. They wheeled me into a different recovery room, and we just got our privacy. It wasn’t like, you know, some of the doctors that we had just didn’t come back in, they still came in, they talked to us for the next two days. They held her.

They wanted to know about us. More about how we were processing, again, it didn’t end there.

Joanna has kept in touch ever since. And one of the nurses that definitely stuck out to us in the recovery was, her name was Star. I just like loved her immensely. I mean I swear I could have been, Star can I have the wallpaper off the wall, she would have given it to me, because we got everything from the shampoo we used to bathe her, little outfit’s she gave us to put her in before we had to say goodbye. She gave us even the little clip that was on her umbilical cord, I mean anything that we touched was pretty much golden, we just like — we were just so overwhelmed by that.

And just the love that we got from somebody who was a stranger, and that connection that we had. I don’t know if even Teagan would have lived the five-and-a-half hours that she did, if we didn’t get the care that we got from these lovely individuals up here, especially Joanna. Like you have my heart, girlfriend.

But I just, I think one of the hardest moments was when we did have to leave and say goodbye. And Star was so nice to even call the funeral home to have them come pick up our daughter, because that was just a call that we just couldn’t make. I mean we had planned her funeral and everything while I was still pregnant. That had to be one of the hardest days also, sitting there in a funeral home planning a funeral for a baby that’s kicking inside of your womb. Letting me know, mom I’m still here. And yet that moment had come.

We were ready to not only live it, but now it’s we got to turn this baby over. And so Star just being as loving as she was, that had to be one of the hardest things that we did was those last moments singing to her, loving on her. He danced with her because we knew we wouldn’t get that time. You’re not just mourning the loss of your child, but mourning the dreams that you had for this child. The things that you always wanted to do with her. And now they weren’t going to happen.

And so handing her off to Star and giving my baby that I just had, had just passed away, words just can’t describe, and I’m just so grateful for how humble she was and how loving she was, and how wonderful everybody was in this program. And that they didn’t allow the story to end with, well this is what she has, you know, go forth and do great things. Let us know what happens. It was, no we’re in this together. We’re going to do this together.

You don’t have to face this alone, and you’re not alone. Everything from getting connected to other couples, support groups, reading literature. I mean, I don’t think there was anything that was left to the imagination or anything that was left “undone.”

And so because of the wonderful gift that his sister, Jason’s sister, had given us with the robe, Joanna really helped us work after her, besides always asking how are you eating? How are you sleeping? All that kind of stuff, what can you guys do to helping your grief to give back? No matter how big or small that looks. And she had to reign me in because I was ready to go to Capitol Hill at one point for something.

So we decided, I know, it’s funny now but it’s kind of like what was I thinking? But we decided we were so moved by what his sister did with the robes that as we say we’re like little elves, every weekend, ever since, and we’ve been making robes to donate to the Garbose Family SDU Unit for other families who know that their child may or may not survive long past birth. And so it’s just a little gift to them that we can give to say, you know what, you’re not alone. There’s another couple, another baby that’s gone through this. And you know what, just like you said, not to steal your words, but we’re going to be OK. We’re going to be OK.

The story doesn’t have to end in despair. Yes it’s agonizing grief. Yes we can’t put it into words. But it’s not without hope. And if that’s the one takeaway that everybody gets in this room today, that is amazing. Because there’s always hope. All of these babies’ lives, our Teagan Joy’s life has purpose. So, I’m sure Jason is going to share a little bit more, but thank you for letting me share.

Jason: Thank you. I just wanted to end with just a couple of comments. First of all I just again wanted to thank the staff up here, and I see some familiar faces out there in the audience. You guys have been tremendous. And I know day in and day out it can be challenging when you’re dealing with families that you give hard news to, and that can be tough on your guys emotionally.

And I just wanted to encourage you guys to keep on keeping on. You guys are doing a tremendous job. The need is great out there. It’s the statistics that Joanna showed, the need is tremendous. Every day the center is full of parents with their unborn child, awaiting to get diagnosed or treated. And it’s completely full. The need is great.

And if you’re here from another institution or another hospital and you’re looking to start up a program like this, I would strongly encourage you to do that. The need is great out there. There are people that are hurting. And CHOP has developed such a phenomenal program to meet the physical, spiritual needs of not only the families but also of the child that is in the mother’s womb.

And I just also personally want to thank the Heath family for their generous support of this program. You guys saw a need and you guys took action. And you’re leaving a beautiful legacy. And I just really wanted to thank you guys for that.

We’re personally invested in CHOP. We’re little elves; we’re making robes. We just dropped off a bunch of them last week. And we’re invested. This CHOP is our family. We walk through these halls and it’s our home. And you know if you have any questions or anything like that, you know we’re — all these families are here more than willing to talk to you and give you our insights and anything you need. You know …