Twin Reversed Arterial Perfusion Sequence: Inés’ Story
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Melissa and Tony were crushed when they learned they had lost one of the twin girls they were expecting. But they felt certain about one thing: that the Center for Fetal Diagnosis and Treatment at Children’s Hospital of Philadelphia offered the best chance to save their other daughter’s life. Read their story and meet Inés.
Less than two months after getting married, Melissa and Tony were surprised to learn they were expecting a child. Melissa had four children from her previous marriage, but didn’t know if she would be able to have any more due to complications with polycystic ovaries, as well as having a cantaloupe-sized tumor and her fallopian tube surgically removed.
“We thought if we had a baby it would be a miracle,” says Melissa, who is president and co-founder of eMerge Americas, a global technology platform working to transform Miami into a tech hub for the Americas.
At an appointment with her OB-GYN very early in the pregnancy, Melissa got more surprising news: she was carrying identical twins who shared the same placenta (monochorionic).
“We couldn’t believe it,” says Melissa.
Given her medical history, Melissa had frequent appointments with her OB-GYN to monitor the pregnancy. During an appointment at three months gestation, when the fetuses were larger, the doctor noticed that only one twin had a heartbeat.
Diagnosed with TRAP sequence
Melissa and Tony were crushed to learn they had lost one of the babies. Then, at an ultrasound a few weeks later when the couple expected to learn the gender of the babies (girls), they got more bad news: The twin whose heart had stopped beating appeared to have grown since the last appointment.
“I could tell right away by the doctor’s face that there was something serious going wrong,” says Melissa. “He said he had never seen a patient with it.”
The OB-GYN sent Melissa and Tony to see a maternal-fetal medicine specialist (MFM) immediately. Like the OB-GYN, the MFM had never had a patient with the complication, which is called twin reversed arterial perfusion sequence, or TRAP sequence for short. The healthy twin was pumping blood to the deceased twin’s tissue, which was causing it to grow. The condition was placing an enormous demand on the healthy twin’s heart and now put that twin at risk for heart failure.
“It was terrifying for us,” says Melissa. “I felt as if Inés, the healthy twin, was trying to save her twin sister’s life by continuing to pump blood into her. It was truly heartbreaking.” The couple told their parents the sad news, but carried on with a small family gender reveal gathering they had planned for that evening, not wanting to ruin the special night for their other children, who were excited to learn about their new sibling.
From devastation to preparation
That was one of the hardest days of Melissa and Tony’s life. But at the end of it, one thing was certain: the Center for Fetal Diagnosis and Treatment (CFDT) at the Children’s Hospital of Philadelphia (CHOP) offered the best chance to save Ines’ life. This fact had been stressed by both of Melissa’s doctors as well as close friends in the medical field. So, Melissa called the CFDT, and two days later, she and Tony flew to Philadelphia for a comprehensive evaluation.
“We had never experienced such incredible care as we did the moment we stepped foot in that hospital. We knew there were a lot of families going through some terrible times, but they made us feel like we were the only family there because of the attention they gave us.”
After the evaluation, the fetal team met with Melissa and Tony to talk about their options. They had two: undergo a fetal surgery procedure that would stop blood flow to the tissue of the deceased twin or continue with the pregnancy and hope Ines survived. Both options were risky, but knowing that CFDT team is one of only a handful in the world capable of performing such a complex, delicate procedure gave them confidence. They decided on fetal surgery.
“To give you context on the rarity of TRAP, it occurs in one in 35,000 identical twin pregnancies,” says Tony. “Roughly 8 to 10 cases around the world on an annual basis. To be in the hands of a team dedicated to this when it’s so rare gave us an incredible sense of peace and calm. You’re already in a panicked, stressful mode, and just walking through the doors of CHOP put us at ease.”
Daily monitoring and long-distance collaboration
The couple returned to Miami, where, every day, Melissa’s MFM monitored the blood flow between the twins and communicated the measurements to Melissa’s OB-GYN and the CFDT team so they could determine the right time for Melissa to go back to Philadelphia for fetal surgery.
Throughout that period, the CFDT team not only continued to support the family medically, but also provided mental and emotional support. Members from the center’s psychosocial support team regularly called and emailed the couple to check in, and they connected them with other families who had been cared for at the center.
When Melissa was 19 weeks pregnant, her MFM noticed the blood flow between the twins had increased. Melissa and Tony flew to Philadelphia that weekend and fetal surgery was scheduled for Monday morning. But a presurgical ultrasound the morning of surgery demonstrated there was no longer any blood flowing between the twins. At some point since Melissa’s last ultrasound, the umbilical cord had clotted off.
The fetal surgery was no longer needed. Melissa returned home and underwent weekly ultrasounds with her MFM, where the close collaboration between her MFM, OB-GYN and the CFDT team continued for the remainder of the pregnancy and delivery planning.
Born healthy and beyond grateful
Inés was born via C-section two weeks before her due date. Melissa also delivered Inés’ twin sister as well, who was about the size of a 5- to 6-month-old fetus. There had been concern among her care team that Inés might have heart problems due to the strain the TRAP sequence had put on her heart. But she hasn’t had any heart or other health issues.
“She is perfect,” says Melissa. “This is the story of incredible doctors and lots of miracles. This was across two different states, with two teams in Florida — my MFM and OB-GYN — working together locally and communicating as one with the team in Philadelphia. Seamless communication across the miles. There aren’t enough thank-you’s that we can give to the CHOP team. Everyone who helped us was exceptional.”
Inés recently turned 4 years old. Neither she nor her siblings know yet that she was an identical twin and the complicated details around all she went through before birth, but both Melissa and Tony have every intention of telling all of their children when they are a little older.
“When this all happened, our other children were very young,” says Melissa. “It was something that was very difficult for us, as adults, to process, and we knew it would be even more difficult for them to process. Maybe this story will help us in sharing Inés’ story with them.”
