The Story of Addy and Lily: Birth and Separation of Conjoined Twins

The Story of Addy and Lily: Birth and Separation of Conjoined Twins

The Story of Addy and Lily: Birth and Separation of Conjoined Twins

When an ultrasound early in the second trimester showed they were expecting conjoined twins, Dom and Maggie began evaluating hospitals, willing to travel as far as necessary from their home in Chicago for care. After they met the team at Children’s Hospital of Philadelphia, their decision was made.

Illustration of thoraco-omphalopagus connection
In a thoraco-omphalopagus connection, conjoined twins are joined at the chest and abdomen

At long last, it was time. The crib shared by twins, Addy and Lily, was carefully wheeled from their room in Children’s Hospital of Philadelphia’s Pediatric Intensive Care Unit (PICU) to a state-of-the-art operating room. Their parents, Maggie and Dom, followed closely behind as their little loves, just 10 months old, embarked on a personal and medical milestone.

The next time Maggie and Dom saw their girls, 10 hours later, they were in separate cribs for the first time in their lives. From the time they were in their mother’s womb until that surgery, they had been conjoined twins, connected to one another at the chest and abdomen.

What caused their connection is a medical mystery. What led to their separation, a medical marvel.

Diagnosed before birth

In July of 2020, eager parents-to-be Dom and Maggie purchased their first home in the suburbs of Chicago in anticipation of expanding to a family of three. A month later, they learned not only that they were expecting twins, but that the girls were conjoined. It was a thoraco-omphalopagus connection, which means the girls were joined at the chest and abdomen. They would need intensive care before, during and after birth to defy the odds and survive.

The couple was referred to Children’s Hospital of Philadelphia (CHOP). Conjoined twins are very rare, occurring roughly once in every 50,000 births. CHOP is one of only a few hospitals in the country with experience separating conjoined twins. More than 28 pairs of conjoined twins have been separated at CHOP since 1957, the most of any hospital in the country. World-renowned pediatric general, thoracic and fetal surgeon, Holly Hedrick, MD, has led many of these surgeries.

MRI image of conjoined twins
A high resolution fetal MRI shows a detailed view of the twins before birth

From the couple’s first phone call to CHOP’s Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment, they were paired with a fetal therapy coordinator and a social worker who ensured every detail of their care journey was seamless. At their first appointment, Maggie underwent extensive prenatal imaging to establish a clear picture of how the twins were connected to determine if it was possible to separate them.

“They did a five-hour ultrasound, looking at every single fingernail and toenail,” recalls Maggie, in awe of the care team’s thoroughness.

The evaluation found that while the girls were joined at the chest wall, diaphragm and liver, they each had separate, healthy hearts. And their shared liver vasculature and biliary drainage was favorable to divide between them. This meant they were excellent candidates for separation surgery.

They also met with maternal-fetal medicine specialists, genetic counselors, radiologists, neonatologists, psychologists, surgeons, nurses and other members of the Center’s comprehensive team. Over the next few weeks, the MFM team, led by the CFDT’s Director of Obstetrical Services, Julie S. Moldenhauer, MD, worked closely with the referring obstetrician in Chicago to manage prenatal monitoring.

Watch the video below to follow along on their journey.

  • The Separation of Conjoined Twins Lily and Addy Altobelli

    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.
Transcript Transcript


A high-risk delivery of conjoined twins

As the due date approached, the family relocated to Philadelphia and the pregnancy was monitored by Dr. Moldenhauer's team more regularly.

The first hurdle to overcome was the delivery. Dr. Moldenhauer and her team collaborated with the Neonatal Surgery Team to plan out every detail of the high-risk C-section delivery. They performed a simulated walk-through of the high-risk delivery to determine the safest way to position the twins and iron out the logistics of attending to their medical needs immediately after birth.

Lily and Addy were born on Nov. 18, 2020, in CHOP’s Garbose Family Special Delivery Unit (SDU), the world’s first birthing facility within a freestanding children’s hospital designed just for pregnant women carrying babies with known birth defects. For the next four months, the twins were cared for by a specialized team in CHOP’s Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit (N/IICU).

Initially, they had a lot of ups and downs due to breathing issues resulting from their shared diaphragm and chest wall. Maggie and Dom took shifts at their bedside. The couple also made use of the N/IICU’s bedside cameras, which allowed them to get a real-time view of the girls any time, day or night, on their cellphone or computer.

Researchers looking at petri dish

Your gift creates breakthroughs

Donor-funded research finds answers for kids like Addy and Lily.

Another step in the journey: Transfer to the PICU

Addy, Lily and their parents
Dom and Maggie with Lily and Addy as they prepared for separation at CHOP.

A turning point for the girls came when they each received a tracheostomy tube. Their breathing issues stabilized, and they were able to be transferred from the N/IICU to the PICU.

“Taking care of conjoined twins involves so many overlapping teams,” says Dr. Hedrick. “From accurate prenatal diagnosis to the delivery room, N/IICU, PICU, optimizing nutrition and development, complex imaging, anesthesia, surgical expertise, pediatric intensivists in the ICUs, cardiology and pulmonary. Every day was made special by nurses, therapists and psychosocial support. It’s incredibly important for a family to be surrounded by a team experienced in providing the highly personalized care these babies need.”

The CHOP team’s skill is just part of the story. They are also warm and supportive, bonding with families and providing emotional support throughout their journey.

Growing together, gaining strength

Addy and Lily thrived in the PICU. Their fun and loving personalities began to shine through their interactions with their parents and each other. They would often fall asleep with their arms around each other, and they began to hit developmental milestones like speaking. The physical and occupational therapy teams at CHOP were constantly coming up with creative ways to help the twins continue to develop, despite being conjoined.

“Everybody, no matter what type of interaction they had with our girls, loved them,” says Dom, speaking of the bonds the family formed over their yearlong stay at CHOP. “They wanted only the best for them. We saw and felt the true love and support that the CHOP team gave our girls.”

By May, the girls had grown strong enough to prepare for the surgery that would separate them. As a first step, CHOP plastic surgeon, David Low, MD, inserted skin expanders in each infant. The expanders are like water balloons. Over the next few months, the balloons were gradually filled with fluid to slowly stretch the girls’ skin. The extra skin was needed to cover the area of connection after the separation surgery.

Dr. Hedrick led the surgical team in weekly meetings to plan and practice the many complex steps that would be required during the separation. The radiology team even created 3-D models that attached to each other like Lego(R) pieces to help the team visualize the girls’ anatomy.

Conjoined twin separation surgery: Before and after

On October 13, 2021, after months of preparation, Addy and Lily underwent a 10-hour surgery that included dozens: nurses, anesthesiologists, a cardiothoracic surgeon, general surgeons, plastic surgeons, radiologists and more. Each baby was monitored by a dedicated anesthesiology team.

At 2:38 pm, the girls were officially separate. The surgical team then divided into two and rebuilt each girl’s chest and abdominal wall.

“Seeing the girls for the first time as separate beings with their own bodies was incredible,” says Dom of the moment Addy and Lily were wheeled back to their room in their own cribs. “It was a beautiful moment.”

A week before the surgery, Maggie and Dom had given the surgical team a letter they drafted. It began, “To Addy and Lily’s Dream Team” and went on to explain that during the pregnancy they prayed the girls would “have the power to change the world.” The letter was read aloud in the operating room before the surgery.

“Throughout our time at CHOP, our family witnessed this leading institution’s advanced level of expertise in creating something special: miracles.”

Looking forward to a bright future

Following surgery, the girls spent seven weeks in CHOP’s PICU and did amazingly well. When it came time for their discharge, the CHOP team video-conferenced with specialists at Lurie Children’s Hospital to arrange their transfer.

On a beautiful day in early December 2021, the girls flew one at a time with one parent each by medical airplane to Chicago. Since Addy was twin A and always “first,” Maggie insisted that Lily be the first to arrive in Chicago. They spent two weeks at Lurie Children’s under the care of the medical team that will now support them as they grow, and the expectation is that they will continue to thrive.

Addy and Lily in their strollers
Addy and Lily at home near Chicago

“Our hope for the girls is that this is all behind them and that they go on to have full lives that are joyful,” says Dr. Hedrick.

In true storybook fashion, the girls arrived home to find their yard decorated by their new neighbors just in time for Christmas. Being home for the first time as a family of four made the holidays especially magical.

“I can’t thank the team at CHOP enough for their care, focus, experience and determination,” says Maggie, tearfully. “We are just so in awe of what they've accomplished.”