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 Holly Hedrick, MD, and the team at Children’s Hospital of Philadelphia, their decision was made.
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 Holly Hedrick, MD, a world-renowned pediatric general, thoracic and fetal surgeon who has led many teams in the surgical separation of conjoined twins at 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.
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 met with maternal-fetal medicine specialists, genetic counselors, radiologists, neonatologists, psychologists, surgeons, nurses and other members of the Center’s comprehensive team.
“They did a five-hour ultrasound, looking at every single fingernail and toenail,” recalls Maggie, in awe of the care team’s thoroughness. “They did everything they could to make sure they gave us the right answer of if this was possible.”
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.
“Children Hospital of Philadelphia gave us the confidence to say we can do this, and these little girls are going to be OK,” says Dom.
Watch the video below to follow along on their journey.
A high-risk delivery of conjoined twins
The first hurdle to overcome was the delivery. As the due date approached, the family relocated to Philadelphia and the pregnancy was monitored more closely. The Neonatal Surgery Team did 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.
After months of planning for a high-risk delivery via C-section, led by Julie S. Moldenhauer, MD, Director of Obstetrical Services, 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.
Another step in the journey: Transfer to the PICU
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 p.m., 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.
“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.”