At an ultrasound appointment during her first trimester of pregnancy, Philadelphia couple Tim and Shaneka were thrilled to learn Shaneka was carrying twins. This was doubly exciting since twins run in Shaneka’s family! They were unprepared for what they learned next: that their twins were conjoined, and their medical provider did not know if the twins could be carried to term. Unsure about the right next step, they sought a second opinion at Children’s Hospital of Philadelphia (CHOP). Detailed testing at CHOP showed that not only was Shaneka’s pregnancy viable, but their babies could most likely be successfully delivered and separated. It was a long road for the family as they watched the babies grow and learn in the hospital, waiting for them to become strong enough for separation surgery. Now, twin boys, Amari and Javar, are happy, healthy and learning how to hit new milestones in two separate bodies. And soon, the family of six will all be together at home.

Finding hope and empowerment at CHOP

Tim and Shaneka were excited to be expanding their family of four, and giving their children, 9-year-old Kaylum and 3-year-old Anora, new siblings. So, they knew that despite the complications of carrying and delivering conjoined twins, they wanted to do whatever they could to bring healthy babies into the world. After hearing from a medical provider that continuing with the pregnancy might not be the best course of action, they felt lost. And they couldn’t imagine sharing this news with their children.

They decided it was time to seek a second opinion and scheduled an appointment at the Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment (CFDT) at CHOP.

Conjoined twins are very rare, occurring roughly once in every 35,000-80,000 births. CHOP is one of only a few hospitals in the country with experience separating conjoined twins. Thirty-two pairs of conjoined twins have been separated at CHOP since 1957, the most of any hospital in North America. It is rare for a doctor who practices general obstetrics and gynecology or maternal-fetal medicine to participate in the care of a patient carrying a conjoined twin pregnancy. So, in Shaneka’s case, referral to an established fetal therapy center like CHOP was imperative.

The couple met with a team that included maternal-fetal medicine specialist, Nahla Khalek, MD, MPH, MSEd, and pediatric general, thoracic and fetal surgeon, Holly Hedrick, MD, who has led many of the separation surgeries at CHOP. A lengthy evaluation, including an ultrasound, MRI and fetal echocardiogram, revealed good news: the babies each had all their limbs, and separate healthy hearts. They shared the lowest part of the sternum (connected like a U of cartilage at the bottom), the diaphragm, abdominal wall and liver. They each had equal parts of the large liver, and their equal parts were normal sized, so it could be split between the two. All of this meant they had excellent chances for a healthy life outside the womb, and for viable separation.

“Very often when patients come to us, they are disempowered,” says Dr. Khalek. “Their mom joy, their dad joy has been removed or taken away from them because now they're facing a pregnancy that has potentially longstanding implications for their families. It is not unusual for families to share during our conversation at their consultation, that they were previously advised that interruption of pregnancy would be the best way to go.”

Dr. Khalek recalls, “After our consultation with Tim and Shaneka, it was palpable that some of their joy had been restored.”

Tim and Shaneka remember that when they got the new information that day, it restored their confidence tremendously, and they finally felt hopeful. They thought, “Okay, we can do this, we can figure this out!”

Preparing for a peaceful delivery

After the family decided to move forward with pregnancy, Shaneka continued her prenatal care at CHOP, under Dr. Khalek’s care. The maternal-fetal medicine specialist worked together with genetic counselors, radiologists, neonatologists, psychologists, surgeons, nurses and other members of the Center’s comprehensive team to carefully monitor Shaneka’s pregnancy. They worked through a well laid-out strategy for managing the pregnancy, and planning for a scheduled cesarean delivery.

When Shaneka was 30-weeks pregnant, her water broke. She got to her care team at CHOP right away, where she was initially told she would remain on the Garbose Family Special Delivery Unit (SDU) until she was at least 34-weeks before the team would deliver. But, when one of the babies’ heart rates began dropping, doctors decided Shaneka would deliver the next day. It seemed the babies were ready to come out and greet their family and the world!

Led by Dr. Khalek and Dr. Hedrick, the obstetric and neonatology teams in CHOP’s SDU were prepared for Shaneka and her babies, having done simulations of the delivery in advance. Twins Amari and Javar were born on September 29, 2023, weighing three pounds (about 1.5 lbs. each). Shaneka remembers weighing about the same when she was born saying, “My family has a history of fighting babies.” She also took it as a good sign that the twins looked like the men in her family who had recently passed, including her grandfather and two brothers, having gotten their “signature bushy eyebrows.”

About three days after what she describes as a peaceful delivery, while she relaxed to the personal playlist created for her by one of CHOP’s music therapists, Shaneka was released from the hospital. The twins were moved to CHOP’s Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit (N/IICU) for care until after their separation.

Complete family care

As Shaneka healed physically at home, she began experiencing the emotional symptoms that can sometimes come up for women after they've gone through the complex cycle of pregnancy and delivery.

“When it comes to being pregnant,” she said, “a lot of women don't talk about how complicated it is, how life-threatening pregnancy is. It's all hormones. And it is hard to go through pregnancy, and you don't know if you'll have your baby at the end, or if you're going to make it to the end. So, I didn’t connect with them (Amari and Javar) right away. And I feel as though that's not talked about a lot.”

According to Dr. Khalek, “Postpartum depression occurs in about one in five women and in about one in ten men. So, it is fairly common, but not commonly acknowledged. It can be made worse by high-stress environments; that could obviously include the delivery or birth of conjoined twins. Having a child is a process that changes people and having a child with complex needs can have either a positive or a negative effect on those changes. Here at CHOP, it’s important that we are able to hone in on that and determine if it is having a negative effect on a patient’s health. It is one of the reasons why having a psychosocial team embedded into the care of our families is central to our approach. They are a fundamental part of the medical care that we provide to families.”

Psychosocial support in CHOP’s CFDT and SDU addresses our patients’ physical, mental and emotional wellness during their care. From the moment families receive their fetal diagnosis, our psychosocial team members provide compassionate, individualized care for the entire family.

Shaneka was diagnosed with postpartum depression, and referred to Joanna C.M. Cole, PhD, PMH-C, a perinatal psychologist here at CHOP, who helped her work through the feelings she was having. Shaneka said she felt grateful for CHOP’s wraparound approach to care, “CHOP has a whole team. When people are pregnant, they don't think about CHOP unless they are referred for something specific. People were surprised I had my babies at CHOP. But when you’re here you learn it is not just nurses and doctors, they have physical therapists, music therapists and even psychosocial therapists. You get the help that you need, and it’s not just deliver your baby, take your baby home and then go through all these extra emotions alone.”

Gaining strength for separation

Meanwhile, Amari and Javar grew and gained strength together during their time in the N/IICU. They thrived, hitting their developmental milestones, and showed lots of love to one another, often holding hands, or sleeping with their arms wrapped around each other. Shaneka observed how their differing personalities began to shine through too. “The one moving and making sure to be seen all the time (even in ultrasounds) is Javar, who was delivered second. He was the one who cried. Javar is smiley and wants to see everything that’s going on. Amari sleeps a lot while Javar is awake and wants a lot of attention to fall sleep. Amari even slept through the delivery,” she said with a laugh.

The family visited the boys as often as possible. Tim said, “We know that they are well taken care of by CHOP staff. And because the team at CHOP is super communicative, we always know what is going on. The staff also advises us on what will happen day by day. CHOP staff are good at how they care for the twins.” Shaneka echoed Tim’s sentiment reflecting, “That’s what you want when you’re not able to be with your kids. You want them to be someplace where they’re cared for like you would care for them if you were there, or if they were able to come home.”

While they were in the N/IICU, the twins’ care team was focused on making sure they were stabilized and growing. There were MRIs to continue to confirm what was joined and what was separate between them. Cassandra A. Ligh, MD, a pediatric plastic surgeon, placed tissue expanders to maximize the amount of skin available for their separation surgery. Like small, collapsible balloons, the skin expanders gradually expanded through injections, stretching the skin slowly over time so each boy would have enough skin to cover his exposed abdomen after separation.

The big day: separation surgery

At almost 11 months old, Amari and Javar were ready to move to the fourth floor where CHOP surgical patients await their big day. As the family anticipated the upcoming surgery they had concerns of course, but Tim said he “felt super confident that CHOP doctors have dealt with a lot of conjoined twins and had success, so they believe our twins’ surgery will be as well. I looked at the doctors’ level of confidence about the procedure and their level of communication for reassurance. I thought, the CHOP doctors have got this.”

On August 21, 2024, Amari and Javar’s separation day arrived. A team of specialists, including Dr. Hedrick, Dr. Ligh, nurses, anesthesiologists, general surgeons, radiologists and more, was ready for the surgery they had been planning for since before the boys were born. During the 8-hour procedure, the surgical team made careful incisions down each boy’s abdomen, sternum and diaphragm to access and separate the liver. During the liver separation, radiologist Edward R. Oliver, MD, PhD, performed real-time imaging of the insides of the boys’ bodies (an intraoperative ultrasound) to define the vascular equator between the two fused liver masses and indicate (delineate) the positions of the connections between each twin’s blood vessels (vascular connections.) With this part of the surgery complete, Amari and Javar were separate for the first time in their lives!

After the twins were parted and moved to separate sterile tables, Dr. Ligh and the plastic surgery team put a layer of absorbable mesh over their stomachs to hold their intestines and internal organs inside. Then they added a permanent mesh over top of that and closed it all with the natural lining of their bodies to heal. They even created a belly button for each twin.

The twins’ older brother, Kaylum, sweetly expressed the concerns he had during the surgery, and his excitement at seeing his little brothers afterwards. “On the day of the separation, I was at my grandma's house. I couldn’t sleep until my mom sent me a video or a picture of them after they were separated. When I got that video, I was just so happy and relieved. Now everybody’s smiling. We already had four people in our family. Now we have six! Seeing them in real life, being able to touch them separately and not having to hold both at the same time was an amazing feeling.”

Two babies, two cribs

Amari and Javar are doing well after their big surgery. They moved out of the Pediatric Intensive Care Unit (PICU) in less than one week and are working to meet a few milestones so they can go home to live with their family.

They are working with occupational, physical, music and play therapists, plus a speech therapist who helps with feeding. They are enjoying soft foods like applesauce and purees. Their vacuum dressings and drains have been removed. Shaneka and Tim are learning as well, getting comfortable with caring for the boys as their abdomens continue to heal. They’re working with them as they learn to do things like flip over, lie on their stomachs and crawl – activities they couldn’t do when they were connected at the abdomen.

For now, the family is enjoying spending time together. Shaneka has been reading to the boys. Tim is enjoying playing with them—their current favorite is a toy piano. Siblings Kaylum and Anora helped give the boys a bath. Though Amari and Javar will need follow-up care in the future, and Dr. Hedrick and Dr. Ligh will continue to watch how their abdomens function as they grow, the family feels lighter, as if a weight has been lifted. They are grateful to the team at CHOP for helping their family to feel complete.