How an Unusual In-Utero Intervention Saved Nadine’s Life

When Dr. Doaa AlSamrae’s unborn daughter Nadine was diagnosed with a congenital heart defect, an unusual in-utero intervention saved her life.

Q&A with Dr. Doaa AlSamrae: The Bright Idea That Saved Her Baby’s Life

Tell us about your family’s journey with Nadine’s diagnosis.

During my pregnancy while living in Dubai, my child was diagnosed with a congenital heart defect (pulmonary atresia with intact septum) at the 20-week scan. This condition where the main connection that sends the blood from the heart to the lungs is closed, would have made her develop hypoplastic right heart syndrome, commonly known as “half a heart” syndrome after birth. My husband and I were told that there was nothing that could be done to prevent it, and that the child would need many surgeries after birth, experience many difficulties, and have a low life expectancy. I went home and cried for hours.

Suddenly, I remembered a scene from Grey’s Anatomy where a surgery was performed on a baby inside the mother’s womb. In my region and many parts of the world, such a surgery was not known or imagined. I immediately started researching whether this surgery would be possible for my unborn baby. My husband and I began contacting hospitals around the world. Despite difficulty getting in contact and the short window of opportunity, we finally received an email from the team at University Hospitals Rainbow Babies and Children’s Hospital in Cleveland, Ohio.

We travelled the world to save her life and underwent in-utero surgery, a procedure performed on a fetus in the uterus. This prevented the condition by creating an opening between the heart and the lung, allowing the heart to grow. When the doctors in Dubai witnessed her heart grow following the surgery, they started to tell others about in-utero intervention — so before she was born, she was already saving lives! That’s why we named her Nadine, which means “hope” in French and why we call her story “Hope from the Womb”.

Babies with congenital heart defects may have other conditions and we later discovered that Nadine also had craniosynostosis, a head condition. On her first birthday, Nadine had her first head surgery to expand her skull and allow her brain to grow. After four surgeries in total, she is now a two-year-old thriving baby and an amazing heart and cranio warrior.

Is there a part of Nadine’s heart health journey that’s been particularly triumphant?

The most difficult part of this journey is when I gave birth to Nadine. We knew, despite the fetal heart intervention, that there was a possibility that the opening would close again. I delivered my baby through a Cesarean section, and I didn’t see her. She was taken to Al Jalila Children’s Specialty Hospital in Dubai right away to fight for her life. That was very difficult for me. Immediately, we heard the news that the opening was closed, and that the doctors would attempt to open it with minimally-invasive surgery.

When that didn’t work, we were told that she would have to have open-heart surgery on the third day of her life. I was taken by wheelchair to the children’s hospital so I could see my baby for the first time, before she went into surgery. She went in, with a big group of doctors, and after the long hours of open-heart surgery, I saw my miracle baby being brought toward me, her father, and our families who were standing beside us the entire time by the amazing medical team, alive.

What’s the biggest misconception about congenital heart defects and what do you want parents to know?

Congenital heart defects are common, with 1 in every 100 babies affected. Yet, the funding for research is limited. But in the last 10 years, new surgeries have saved 30 percent more lives. Funding more research has the ability to save thousands of children’s lives.

We also want parents to understand the importance of pregnancy scans, early diagnosis, and collaboration between health care teams and parents for the best of the baby. People around the world may not know that life-saving surgeries exist. As I knew about in-utero surgery because of Grey’s Anatomy, I hope other people know about these possibilities because of Nadine’s story.