CHOP’s Most Inspiring Stories

Rahemeen: Hey, peek-a-boo. Peek-a-boo. Good boy, Mango. I love animals so much. Like horses, butterflies, cats, dogs, birds. I wanna be a scientist as my main job, and then my second job I wanna be a zookeeper.

Zainab: She's a jolly girl.

Rahemeen: Here you go. Buddy 

Zainab: Rahemeen is 10 years old. She's a very good student. She loves math and science. She loves to draw. She's a very artistic person. She's a very kind person as well. And she's a good daughter. That's what I can tell. She's a very good daughter. 

Rahemeen: When I was five, I asked my mom a really weird question.

Why do I keep going to the hospital? 

Zainab: To the hospital? Yes. 

Janet Kwiatkowski, MD, MSCRE: Beta thalassemia is an inherited blood disorder where the body is unable to make enough hemoglobin. Hemoglobin is what is inside the red blood cells and carries oxygen to all of the tissues.

Alexis Thompson, MD, MPH: You need to come to the hospital every two to four weeks for transfusions of blood. But this is transfusions for a lifetime.

Zainab: It's been 10 years. She has getting so many transfusions. It's uncountable. We go every three weeks, and it's a quite a long day. It's almost a full day for us in the hospital. 

Rahemeen: I had to miss a lot of parties in school and a lot of normal activities like Easter egg hunts or like just fun stuff. 

Zainab: There are many challenges with beta thalassemia kids.

Rahemeen: I feel like really tired. A simple task like. Can you put the water bottles in the fridge? It'll make me exhausted and my back will hurt like so bad. Sometimes I don't even play outside, even if it's a nice weather and you have headaches. Lots of lots of headaches. 

Zainab: We were living in Dubai first, and from there the doctors told us to get second opinion what we can do with her treatment.

So we took her to Paris, we took her to Italy, Rome, Switzerland and then we took ...

Rahemeen: Turkey 

Zainab: ... her to Turkey, Korea.

Janet Kwiatkowski, MD, MSCRE: We at CHOP, have been involved in the gene therapy trials from really, from the earliest part.

Timothy Olson, MD, PhD: We have been a leading clinical trial site and to see a therapy like this move into being widely available for patients, this is why we do what we do. 

Zainab: As soon as we heard about gene therapy, my first initial was, let's do it. This is the best option. This is the safest option because it's her own cell.

It's not gonna, like, her body is not gonna go through some sort of rejection from it.

The main concern is when she received chemo. They told us that the chemo is gonna be very strong. 

Nurse: How are you feeling? 

Rahemeen: Okay. 

Janet Kwiatkowski, MD, MSCRE: The process for gene therapy is involved. We have to first collect the blood stem cells from the patient. It involves a short hospitalization, and then we are able to take those blood stem cells and in the lab, they change the blood stem cells to make them healthier.

The patient will then come back into the hospital and get chemotherapy like you would get for a bone marrow transplant, but instead of getting somebody else's blood stem cells back will get their modified blood stem cells back. 

Rahemeen: My mom taught me to never think of the negative and always think of the positive what's happening. And I think that's a really good thing. 

Zainab: What our hopes for gene therapy is to Rahemeen to live a long, healthy life without getting any more transfusions so she can have whatever she wants to do with her life.

Rahemeen: And I hope like that I'll be healthy and not miss anything. 

Zainab: Yeah.

Janet Kwiatkowski, MD, MSCRE: A successful treatment with gene therapy really changes patients' lives. I think the most important thing is that patients are no longer tied to having to be near their transfusion center every three weeks. It really kind of frees them up and lets them live much more normal lives 

Timothy Olson, MD, PhD: To know now that that patient who comes into my office seeking a curative therapy, I should have an option available for the vast majority of patients. It's a game changer. 

Rahemeen: I'm happy we did the treatment. 

Zainab: Was it worth it? 

Rahemeen: Yeah. In the beginning I was like, how like how's it gonna go? But I think it was good.

Zainab: Yeah, me too.

Rahemeen: You just need be strong to go through it. After the treatment, I definitely feel much better. And now my back doesn't hurt and my energy level has been really good after.

Zainab: I can tell that.

Rahemeen: Yeah. 

Janet Kwiatkowski, MD, MSCRE: Rahemeen and her family went through this long and difficult process, but she did very well, and now she is off of transfusions and is maintaining a good hemoglobin level. 

Zainab: Now we don't have to worry about going to the hospital or driving, getting like sick or she's gonna feel low, she's gonna have back pains.

That's a big change 

Janet Kwiatkowski, MD, MSCRE: To see the changes in [00:06:00] patients and how happy they are after receiving the treatments and how their lives have really been impacted and the kinds of things that they're looking forward to in their future, which they maybe weren't looking forward to before. It's just incredible to watch and it's been great to be a part of it.

Rahemeen: One for you and one for you. There's like so many things you can do that I couldn't do the previous ... 

Zainab: Previous, years. Yeah. 

Rahemeen: Here goes. I'm gonna try out for soccer and I also have time to go to like trampoline parks. Bye. Dance parties. 

Zainab: Now, you're not gonna miss any of those things. 

Rahemeen: You are free to do everything now.

Alexis Thompson, MD, MPH: When you talk to parents, I think that many of them now can look forward to what will their children look like as they move through middle age and beyond. What role will they have in being part of their grandchildren's lives? I'm looking forward to, I hope, seeing families that can really think in the way that many of the rest of us do about the full arc of our lives.

Brailey: The biggest question we just kept asking is, what do we do? We had never heard of this condition.

By what our physicians were saying in Tennessee was, this is something that you have to act on fast. And so we needed their guidance. So we started asking: Where do we go? Who do we see? 

Louis: And, and even then they were just like, there's nothing they can do. And it was more that we're just going to have to wait for her to die.

Brailey: When we first heard of the diagnosis, even back home, we just kept praying and asking God, just help us find our answer. And within a week we were at CHOP and there was hope. And at that point, when we heard there is something that can be done, even though it was risky and there are risk involved, you know, we discussed it one last time, but we decided let's give her the best chance we possibly can.

And so we ... we said yes.

Juliana Sanchez Gebb, MD: I think in Arley's case, she would not have survived if we had waited. You know, I didn't even think we could wait the two days to get until Monday before we intervened. I think she would have been too sick to survive at that early gestational age.

So I saw them on a Friday and they said, you know, can we wait until Monday? We're feeling a little nervous about all of this happening so quickly. And I said, I don't think we can. I think that we have to do the surgery tomorrow. 

Holly L. Hedrick, MD: A pericardial teratoma is a mass or tumor that develops inside of the sac that surrounds the heart.

The heart needs to be able to fill and contract, fill and contract. And if there's a mass that's pushing on it, then it has difficulty quickly. Especially if that mass grows. 

Jack Rychick, MD: They can grow very, very large. And if they grow in the wrong places, it can impede the normal cells and normal organs and the function of those organs that are there.

Holly L. Hedrick, MD: It's a mass. It's pushing on the heart. And if we remove the mass, the heart can work and the baby can recover. But if you wait till the baby is too sick, then there's really no hope.

Jack Rychick, MD: With fetal surgery. The tricky part, of course, is, is the access and gaining access, and how the heck do you do that with a fetus, where you have both the mom and her health and trying to get to the fetus itself, let alone the size of the fetus and considerations about the fetal circulation and maintaining that in a safe manner.

That's been the challenge previously, up until the innovative techniques that have been developed by CHOP in the last few years.

Holly L. Hedrick, MD: During the operation, we expose the uterus. It's a careful mapping of exactly where the placenta is by maternal fetal medicine. So Dr. JeGebbas there with ultrasound continuously looking at the fluid, looking at where the placenta was, and choosing the ideal spot to enter the uterus. And then we expose the baby's chest.

And we do that by actually leaving most of the baby inside and just the arms come out. So one hand gets an IV for giving fluids, blood, medicines. Another hand gets a pulse oximeter. So that we can monitor the baby continuously. At the time we did the fetal surgery, Arley was 832 grams, which is roughly 1.8 pounds. She would fit in your hand. 

Jack Rychick, MD: It's science fiction. During my medical school days, this was unimaginable. That we'd be able to perform fetal surgery and to be able to get a successful outcome. I think it's still science fiction, you know, to a degree. 

Juliana Sanchez Gebb, MD: The teamwork is critical because if you don't have the baby being resuscitated in the right way, if you don't have the mom being cared for in the right way so that her blood pressure and her heart rate are good, then the outcome would be poor.

So in order to have a good outcome, you really need all of the subspecialists to get together and make a plan together.

Holly L. Hedrick, MD: Dr. Maeda from cardiac surgery came in and he removed the tumor and repaired the place where it was attached to the aorta.

After the tumor is out, we close the chest, close the skin, put the baby back inside, take all the monitors off. Close the uterus in two layers, put it back inside, close the layers of the abdominal wall, and from then on her pregnancy life is very altered and changed in terms of what she's allowed to do and how she needs to be close by and her whole family's life has changed.

Jack Rychick, MD: CHOP is at the forefront of managing tumors like this. And it does take an element of confidence and a spirit of innovation. Confidence in your team members that they're at the top of their game, and the faith of a family that they put in us that we can deliver on what we're offering.

Brailey: The first moment I saw her, I remember joy, relief. I remember looking to see what her chest might look like. Would there be a significant scar? Would she look different? And she looked perfect to us. 

Louis: It was, it was amazing. It was, it's like the light at the end of the tunnel, the finish line. It's really thrilling that we've gotten this far.

That, you know, technology has gotten this far, you know. We're very thankful that medicine has advanced enough that they can do open heart surgery on a fetus.

Brailey: So right now Arley is almost, almost two months old. And she's doing great. She is having regular checkups with her pediatrician. And as far as her growing and developing, they don't expect there to be any issues. Her heart is functioning normally. So, they say just let her grow up and do all the normal kid stuff.

So, she's perfect.

Jack Rychick, MD: I've seen probably two dozen cases of pericardial teratoma or suspicion of pericardial teratoma in my career, probably in the past 15 or 16 years. Only four of those cases have fulfilled the candidacy criteria of falling just in the right time for an intervention for fetal surgery and also have fulfilled the criteria importantly, of having the bravery of a family

to be willing to participate in this incredibly innovative undertaking. We've done four cases and there has been 100 percent survival in each one of the cases. There are no individuals who've walked the face of the earth before that have had this condition and have survived. Each one of these kids and each one of these families are pioneers.

Lilliana: One, two, three, four. 

Angelina: How many pink things are there? Pink cans.

Lilliana: Five. 

Angelina: Five? Good job. Okay. How many little children are there? The best thing about being a parent is watching your children grow. And being confident in themselves. And just being accepting of themselves. Because that's so important. I feel like the one thing that you have to do as a parent is teach your children to love themselves and to respect themselves and to show them that they matter and that no matter what decision or the way they look or whatever it is, that they're always going to be loved.

Lilliana: I need baby something to eat.

Angelina: And they're always going to be accepted.

Lilliana's a really outgoing girl. There was never a day that she was like, why am I different, or why don't I have an ear?

Lilliana does not have an ear canal or anything inside her ear, so she's completely deaf from that ear. You know, they always say God doesn't give you what you can't handle. And at first, having a son who was autistic, and we found out when he was three, and Lilliana's only 18 months apart from him, so it was really hard.

Like, the struggles were hard, and they still are hard. Every day we're like, you know, something new.

Jordan Swanson, MD, MSc: How are you? It's great to see you, Lilliana. As a young parent, it always impresses me when families are trying to piece together what happens when their child looks different than other children. And when I first met their family, they could see that she was largely missing her right ear. But they were also seeing other things, like the fact that her chin was pointed to that side.

Her teeth line, instead of being straight, was canted up on one side. She had less full cheekbones on one side. And for a lot of families, trying to figure out a unifying diagnosis is so important for them. All right, look up at the ceiling. Good job. So Lilliana has hemifacial microsomia. That means half of the face is smaller and didn't develop as fully as the other half of the face.

Because the other elements of the ear are all missing. So, this was the real big first step for Lilliana's treatment of reconstructing her ear. Because her jaw elements are smaller on the right hand side. The second aspect that we've not yet addressed, is her jaw development. She needs to grow a little bit more, but probably in a few years as her adult teeth are starting to come in, will be the right time to do a procedure to help realign her jaws and anticipate her future growth.

Our first clinic visit was really kind of an ah ha moment, I think for them of realizing, you know what, all these pieces that we're seeing actually come together. So I have an important question for you Lilliana. I'm going to start with you, and then I'm going to ask your dad, and then I'm going to ask your mom.

Tell me what we're going to do in your surgery. How are we going to reconstruct your ear? 

Lilliana: Ear. 

Jordan Swanson, MD, MSc: Any idea how? Okay, that's fair. 

Leanne Magee, PhD: Plastic surgery, I think, is the perfect fit for pediatric psychology because we treat not just a condition, but a whole patient. And so kids live in families, in communities, in schools, in neighborhoods, and whatever medical condition they're managing and whatever surgery they're going through, they're doing that in a much broader system and context. So it puts kids at risk for additional social challenges, like curious questions and occasionally teasing and bullying from peers. So I think when we can integrate psychology services into surgical services, we help make sure that kids understand what their choices are, what to expect, and helping the whole family navigate their care. 

Lilliana: I see you.

Leanne Magee, PhD: That's me. Yeah. I have to wear that around the hospital so everybody knows it's me. 

Lilliana: Your ear.

Leanne Magee, PhD: I have two. Yeah. When I was born, I had two ears. 

Angelina: It's okay to be different. It's okay just to be who you are. You don't have to change inside. If you feel comfortable changing your outside, you don't have to make everybody else happy.

You just have to make yourself happy. 

Jordan Swanson, MD, MSc: Lillian's parents are awesome because they try to put her, even as a five year old, in the driver's seat. And try to ask her, hey, what do you think about this? And since I have a five year old right now, this is near and dear to my heart. With ear reconstruction, as we reconstruct that ear, to make that live, we have to get blood flow to it.

So one of the challenges for a surgery from my standpoint is, the blood supply of that flap has to work perfectly. So it's not about getting it 98 or 99 percent right, it has to be 100 percent right. 

Angelina: Thank you Dr. Swanson. 

Jordan Swanson, MD, MSc: You are so welcome. So I'll see you next Tuesday, bright and early, okay? 

Angelina: So her upcoming surgery is next Tuesday.

They're going to be making Lilliana an ear. Now Lilliana will never be able to hear from that ear. The purpose of the surgery is to make Lilliana comfortable with herself so that she doesn't have to feel like she's any different than anybody else. And what we do now will affect her in our future and we wanted to make the right decision and after having many conversations with Dr. Swanson, we came to just the conclusion that this was this is what was best for Lilliana. 

Sergio: I mean, she is a very strong girl and they can say like young age having that kind of surgery. Wow, that's amazing. I never see a child have so much, like strong personality in her. 

Angelina: This is the beginning of her journey.

This is the beginning of her story. Who's that?

Jordan Swanson, MD, MSc: Well guys, good morning. 

Angelina: Good morning. 

Jordan Swanson, MD, MSc: How have you been in the last couple of weeks? Doing okay? 

Angelina: Little nervous, but I think, I think that's just normal. 

Jordan Swanson, MD, MSc: You know, we've talked a little bit in the past about her reconstructive journey. The thing about today is, Lilli's just gonna take a nap for a few hours while we do this.

And if she woke up at two in the morning, sounds like it's a good day to take a nap. So a little bit more about today. Surgery lasts about six hours or so. The nurses are gonna be giving you guys updates as we go. Letting you know that things are going okay, okay? I feel like you're giving me good luck. 

Lilliana: High five.

Jordan Swanson, MD, MSc: High five! 

Angelina: I love you, my girl. 

Jordan Swanson, MD, MSc: You can see Lilliana's future shouldn't just be a reconstructed girl with two ears. Today was talking about Lilliana becoming a doctor. Lilliana the head of the dance troupe. These are the things we want the Lilliana's to be.

Well, we got a day ahead. You talk to a patient like that in pre op, and it sure makes you want to do everything you possibly can to do as well as possible, huh?

So today is a pretty special day because we're basically going to reconstruct an ear from nothing. How do we do that? Historically, people for many years and decades used parts of our body, like primarily the cartilage of the ribs, to reconstruct an ear. The challenges with that are a few, though.

Taking out ribs can be very consequential. It often takes three or four ribs worth of cartilage in order to reconstruct an ear. So, over the last 20 or 30 years, there's been a lot of efforts to how to do this better. We use an implant. Basically, porous polyethylene, which is like a medical grade plastic with pores and holes into it that the body tissue can grow into, covering it with a flap of the body's tissue that has its own blood supply and enables skin grafts to be placed over the top.

It's a meticulous surgery that requires everything to come together just right. Her external auditory canal will be right there, so let's make our measurement up from here.

So I think that's gonna be her aspective canal. We have a good 12 centimeters up to about 13. We should be very good there for our distance. 

Angelina: This surgery is a really big part of Lilliana's life for her and in a physical way and emotional. So we're just hoping that Lilliana remains the same the little girl that she is, because I cannot ask for anything, you know, more than that. 

Jordan Swanson, MD, MSc: Look, we're close to something there.

Cool. Alright, I think we see enough here. That's what we want to hear, the good blood flow. Okay, we got some good stuff. So, these are the blood vessels that go through this flap. Unfortunately, these usually start right in front of the ear nubbin right here. And she has some challenging anatomy. Hers starts from behind it, so it's just going to be a challenging dissection getting that out.

So the hardest thing for me about this surgery is that everything can go very smoothly during the operation. But, this is a surgery that can have a very high degree of fragility, even in the weeks and months as it's healing, and has the risk of having a devastating outcome even after the surgery. Good.

That's great. This branch right there, I think, lurking. Can we get a hook, please? Can I get a .5, please? It's a better match at the bottom. We're transplanting an implant into the head, and covering it with biological tissue. And if any of that biological tissue breaks down, and that implant were to get exposed, it's likely going to be infected and have to be removed.

So the ear construct comes from two pieces, and one piece we will use to be the base of the ear, and one piece we will use to be the helix of the ear, like that. Now she's five years old. She's going to grow a little bit more. Her left ear is 88 percent of the size of an adult female. With her hemifacial microcephaly, she's going to have slightly smaller ears.

So all that put together, maybe we want to go, you know, a couple millimeters bigger on this side, but probably not a lot bigger. I'm going to start thinning this in the meantime.

And this skin piece right here actually fits into a good spot. Yeah, that's going to be, that's going to be the contour like that. That's actually pretty good, guys.

So, this is the best, best part of the day in many ways when we finish the procedure and we can go tell the family that it went great. And I always feel a balance here because it's tough on the parents to be anxiously waiting for six hours as this goes on. We're done. 

Angelina: Did she do good? 

Jordan Swanson, MD, MSc: She did great. 

Angelina: Yay! 

Jordan Swanson, MD, MSc: She did really well. 

Sergio: Thank you. 

Jordan Swanson, MD, MSc: No problem. No problem. I can tell from your strong hug that it's been a long day for you guys. So, um, 

Angelina: And for you as well. 

Jordan Swanson, MD, MSc: You know, it's, it's a full day. But everything went really smoothly. Beginning to end, we did it really just as we'd anticipated.

Angelina: You know, this is not something that you want any child to go through. But I, we had to make that choice for Lilliana because we want to give her the best opportunities that she has and we want her to feel complete and whole and you were able to give her something that we could not. So we are forever grateful for that.

Jordan Swanson, MD, MSc: Part of what we all sign up for, everybody who is involved with the Children's Hospital is that we have to live the ups and downs of our patients and our families. I think what keeps us all feeling connected and balanced is patients like Lilliana, for whom getting through surgery takes a bit of cooperation, some anxiety, but as we get through, those results, totally reward the process we all commit to every day.

And I think when we see this for children, we see them get through it, that smile, that happiness, that wholeness is really what drives us all forward.

I'm looking for Lilliana, and I know there's one place to hide in this room, so she must be right there. She's not there? 

Angelina: No, no Lilli here. 

Jordan Swanson, MD, MSc: Alright, well she's left I guess. Oh my gosh, there she is. How are you? So I want to talk to you about your new ear. Can you look in the mirror and see your new ear? What do you think about that ear? 

Lilliana: What is that red thing?

Jordan Swanson, MD, MSc: Yeah, it's still a little bit pink, right? It's still a pink and a little bit of it. But you know what? Every week it looks less and less pink. Every week it looks more and more like your own ear, doesn't it? 

Angelina: It looks like this ear, right? Right. 

Jordan Swanson, MD, MSc: Tell me about how you like your earrings. 

Lilliana: Good. 

Jordan Swanson, MD, MSc: Yeah, nice. Do you like that you and mommy can wear earrings together now?

Lilliana: Yeah. A lot of stuff, when when you go in the store, you have, um, earrings, and lip gloss, and make up. 

Angelina: Your ears pierced? 

Lilliana: Yeah, your ears pierced, and you, it, it hurt a little bit, but it not. 

Jordan Swanson, MD, MSc: Any visit I have with Lilliana, at best I do about 10 percent of the talking. We know who's in charge here.

Angelina: There's always decisions to be made. Good decisions, bad decisions. But we wanted to give her that confidence. When she was younger for her to build and let me tell you, Lilliana is very confident because she's, she's a firecracker. She really, you know, at this age, they don't have any sense of like, this one's different.

That one's different. But as we grow, you know, those feelings occur and it's just a normal thing. So we didn't really want that to happen for her. It amazes me. Like how just such a situation that you think is so bad in life that can turn out to something so good.

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Holly Hedrick, MD: At Children's Hospital, we have a legacy of twin separation. Every single set is unique and that's one of the great challenges. There are no two sets that are the same and so they all have a unique set of challenges. They have a unique set of anatomic considerations. They're from different parts of the country. They're from different parts of the world. They have families that are invested and a huge part of the care, and so that is different in every instance as well. There's a great deal of humility that we approach each of these situations because there can be the unexpected. We've plan, we plan, we plan, we plan, and then we plan for all the contingencies but, there's still that unknown thing. And so in many ways, I feel like every time is a miracle.

Dom Altobelli: It was August 10th of 2020.

Maggie Altobelli: They just wanted us to come in, get routine heartbeat checks and the heartbeat checks would just show a healthy heartbeat. So we thought we were having one kid the whole time and I sat down and the ultrasound tech kind of looked at the ultrasound and put the wand on my belly.

And I thought, "What is that? Like, is there, is there two of them?" And she immediately took off the wand and she said, "I'll be right back. I got to go get the doctor."

When they came back in and told me like their bellies were connected. I thought like, this is, that's okay. We'll just separate them.

Dom Altobelli: Our reaction was naive because I had never even thought that this could be a possibility nor looked into it much prior to this, and and so I'm an eternal optimist. So when I heard that news, I said, "Oh, okay, can we handle it, you know, while they're in utero or do we take care of it afterwards?"

Maggie Altobelli: Slowly, we started to determine, you know, what were our next steps, how serious is this. And the doctor said, "Do your research, make sure you, you know, see what, what all's in store for you, because this is a very long, long journey."

And they weren't lying.

CHOP is known for this type of surgery throughout the whole world. I mean, they have done the most successful separation surgeries and after coming here and leaving our consultation meeting, it was a reality of looking at each other and going, "This is it. We gotta move. And we gotta, we gotta dedicate our life to bringing these girls into the world and giving them a good life and giving them a good chance."

And that's what CHOP did. They give us this chance.

Holly Hedrick, MD: When a conjoined twin family is coming, we usually know about it ahead of time, and so you're always nervous about those images and what it will bring and whether or not it means we're going to be able to go forward with plans for separation. And so that's really the first test are those prenatal images and what's connected, and does it look separable?

So we got really good news that first day. The twins had separate hearts, completely separate, and that they were normal in their anatomy in terms of their hearts. And then we knew that the liver was joined. We knew that their chest wall and body walls were joined. We knew that the diaphragms were joined. The first big challenge is the delivery and it's not to be underestimated what a challenge it can be.

Maggie Altobelli: It really is a high-risk delivery. And most conjoined sets are either they don't make it through to birth, or they're stillborn.

Holly Hedrick, MD: Every little thing that we do with conjoined twins, it's not just double, it's just technically a little bit more difficult because you have to think about their positioning and what's safe.
There are a lot of safety issues. And so we designate core teams really right from the very, very beginning.

Dom Altobelli: The delivery day was, it was wonderful. It was a unique experience. You get in the car and you drive to CHOP knowing that your life is about to change forever. That was a special moment and I hadn't known what they might look like, and you try to find some sense of what that moment might be, but you really don't know until you get to it and you see them laying there and it is, so quickly forgetting they were conjoined.

I just looked at them as, you know, these are our girls and you know, this is two lives right here that the team is taken care of, and know, now we have the opportunity to take care of, so, and it was a special moment. Are you two wrestling with each other?

Maggie Altobelli: And they're just so tiny and they were so beautiful and rosy and, I just loved their little noise. I could hear a little noises from them.

Holly Hedrick, MD: After the babies are born, it's really about stabilizing. So we made sure the babies were stable in the NICU and they were feeding and they were growing and they were in a good spot before we ever planned to do the next step. And so first was the MRIs. And from there we confirmed what was joined and what was separate.

Maggie Altobelli: Once they were transferred to the NICU, it all kind of started from there, you know, we did a lot of research with delivery to separation. And the thing that we forgot about, which is the huge part, is the care.

Nurse: Oh boy! Would you like to go for a little wagon ride?

Dom Altobelli: The next few months, there were some of the ups and downs, and those were really stressful times and there are so many specialists that help the girls. A fast, strong, powerful nursing team. And you come to a place like CHOP for that brainpower. The girls have thrived in that environment cognitively, because they see so many people and everybody comes in with so much joy and we joke that our girls are so smiley and laughy and playful because all they see is happiness from people.

We woke up at 5:00 AM together as a family, and it was a quiet morning in the room and the nursing team kind of let us be for awhile. We did their bath. We sat with mom, we read, we played with toys and the girls were so smiley and happy.

And when were just like crying with excitement and nervousness and love. Just like, "Wow, you girls have no idea what is about to happen."

Maggie Altobelli: Yeah.

Holly Hedrick, MD: It's all about the liver. The liver and the bowel. The Altobelli twins. Addy on the right. We have Lily on the left. Once we have separation, we'll move to another table and then will be the reconstruction process.

The part about pediatric surgery that's always been so attractive is that you fix things, that you get, you're making me feel. That you get people on to where they need to go. You see a problem and you can do something to take care of that problem. And so that's, to me, the most attractive part of it all and the, sort of being part of somebody's life.

So it's like, it's like, it's an incredible thing when a lot of people come together and go the extra mile.

Maggie Altobelli: We got a call at

Dom Altobelli: 2:42

Maggie Altobelli: 2:42, that Addy and Lily have become two separate girls.

Holly Hedrick, MD: It's a great privilege, it's a great joy to be part of something that's intimate and important, then sort of is with you forever.

Maggie Altobelli: It was just like a breath of fresh air to just come back home and be here.

Dom Altobelli: Yeah.

Maggie Altobelli: Yeah.

Dom Altobelli: And then also being able to sit and play as a family and just really hang out has been amazing.

Maggie Altobelli: The day that I picture, is the best day, is when we're at home and we wake up Christmas morning and we get to bring those girls downstairs and they get to open Christmas presents, because those girls deserve it. They deserve to just be normal and sit at home and be loved. And just enjoy life.

There's so much good in the world. And that's something with this experience that I know Maggie and I are really thankful for, is we got to see the best in the world and the good in the world, because anybody who reached out to us, came to us with genuine love, concern for the girls and for us.

And that, I think is the most amazing part of this whole experience is no matter what's happening in the world, there's a whole lot of good, every single hour of every single day.

The girls have guided us through this last year of life and they've showed us what having hope and faith really is, and just that strength and perseverance and going through that type of surgery and just coming out so strong. It's inspiring.

Dom Altobelli: Our wish is for them to be able to pursue a life filled with love and happiness and whatever they do, have a lot of passion for it and just go live, live a great life. They've already given us, you know, more love than we probably could have ever imagined. So we hope that they could spread that love throughout the world.

Heather: I think of me being their mom, I look at them and I see two separate babies. Yes, they're conjoined, but to me there's times where when one of them will be crying and the other one's completely fast asleep, and the one that's crying I like have to remind myself, you can't just pick her up. I think it's just because we're their parents, and we just see them for who they are and not what's wrong with them.

Riley: As a parent, it doesn't matter what the issue with them or what they do or what they look like, you are going to love that child no matter what.

Gregory Heuer, MD, PhD: Kids are connected by the head; they can be connected in a couple of different ways. One is by, if they're connected at the front or the back; one is if they're connected and they just share skin, which is really, really rare, we almost never see that. But in this case, what they share is bone and then the coverings of the brain, the dura. So in these kids, it looks like they just share the skull and the coverings, but they also share this important vein that goes down the middle called the sagittal sinus, which is where about 20 percent of your cardiac output goes through.

Jesse Taylor, MD: It's a very extensive team of people; this is the kind of thing that we get together beforehand and we practice so that the day of surgery, everybody has a very well-defined role; everybody knows what their role is. So it's like a choreographed dance movement.

So it's multiple surgeries over several months. Really young babies are at their most regenerative the early on they are in life. So that's what really, I think, is driving us to do this sooner than later.

Gregory Heuer, MD, PhD:  This is scary surgery and we're scared, but we can't let this sort … the fear limit our ability to operate either. We have to, you know, do the operation that needs to be done; and that's part of surgery, that's part of medicine. I wouldn't ever think that your surgery team or your surgeon or your doctor isn't frightened. In fact, I want my doctor to be frightened for my daughter when he sees her or she sees her. I want her to be scared and thinking about every bad thing that can happen to try to stop it. But be knowledgeable enough to stop it too.

The first time we met the Delaney family was before the twins were even born. They got referred to CHOP because we have a fetal center. We've met with the family to discuss what surgeries these twins might need. This is life-threatening operation.

I told them that the twins can die from this or we could lose one twin and not the other. We really felt strongly that, although there's risks, although they can both pass away from this that it's worth the risks to try to do it safely so that we can give them the best life that we can.

Heather: When the girls were born, they were 2 pounds, 1 ounce a piece. So they were able to fit in my shirt and do skin to skin with them. So they've grown a lot. Now we need two people to take them in and out of bed and two people to hold them at a time, and they require a little bit more arm strength.

I've never had that chance to, you know, hold my baby in front of me and look at them and study them. I have to look at both of them and they're usually pretty far away from me. And so, just to have that contact with them and be able to do it whenever I want to, with no wires attached will be great.

The girls are starting to want to see the world. They want to you know, look at what they're hearing. They wanna see people walking back-and-forth. So once they're separated, for them to sit up and see everything, being able to look whichever way they wanna look, regardless of what their sister is doing, I think will be amazing.

Riley: You're here for a reason, it's totally true, you're part of a world that is counting on you. But life works together, the good and the bad, the silly and awful and happy and sad. Remember that next time a day goes all wrong, to somebody else, you will always be strong.

Heather:  Do good. You're big, you're brave, you're strong, right?

N. Scott Adzick, MD: Conjoined twin separation is clearly a team sport.  You need all the specialists that play a role, sort of like setting up an orchestra, right? You want everything to play together, which requires tremendous experience, tremendous technical expertise. And a crucial ingredient in my mind, is passion for excellence that permeates all areas of the Children's Hospital of Philadelphia.

Heather: At some points, you're really optimistic, really excited. And then other times, it's nerve wracking, we don't know which way it's going to turn, don't know what decisions are going to have to be made.

So when they started, they went in through one side and they separated a lot of the little blood vessels that they share. They ended up finding that they did share a little bit of brain tissue, and they did separate it. Thankfully, the brains didn't have any swelling; it was very minor.

They separated from one side up to the sagittal sinus, and they since then have now flipped them and just started to go from the other side to the sagittal sinus; and the sagittal sinus is kind of the end goal — a lot of anticipation.

Gregory Heuer, MD, PhD: That was hard. Everything went well until we got to the sinus and Abby did not like that sinus being taken, so she bled and she … her brain swelled, so it was really close to losing her. I'm worried about her brain swelling, so I think they're both going to be sick for a few days at least. I might even keep them asleep and basically in a medically induced coma. But they're separated, they're safe, the anesthesia team was just heroic.

Jesse Taylor, MD: It's scary to see, these kids that frankly we've become very emotionally attached to, teetering on the brink. And they came out OK, and then that's pretty incredible again. I think it's a real testament; everybody sticking in there. It was a lengthy operation and lots of ups and down, emotionally and physically both for us and for all the team members and for the girls themselves.

Two days after surgery

Riley: And that makes a story, it's really not bad, but it still could be better, supposed I had. Was there nothing to look at, no people to greet, did not nothing excite you or make your heart beat? Nothing I said, growing red as a beet, but a plain horse and wagon on Mulberry Street.

Heather: The past two months from surgery have been a rollercoaster, to say the least. They're such happy, content little girls for what they've gone through. They've never lived outside hospital walls and they're still happy; they're not afraid of people. It's just amazing to see that they're so brave through all of this.

Say I love you daddy.

The girls’ journey is far from over. And it feels a lot of times like we're about to go home, we're almost done, but I have to keep reminding myself we still have a lot of obstacles to overcome.

The biggest thing is right now they don't have any skull on the top of their heads. So, we will have to come back to CHOP and get some reconstruction done.

CHOP was one of the only places that gave us hope for our girls. When we first found out about them, we really didn't know what to expect, but in coming here, it's been a family. That really is a place where miracles happen.