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Survivor Stories
 
Nayla's Bronchopulmonary Sequestration Survivor Story 

Nayla was a fighter before she was even born. Diagnosed with a rare, non-cancerous, lung mass when she was still growing inside her mother Isalya, Nayla had to fight just to make it into the world.

When Isalya was seven months pregnant doctors noticed that there was an unusual amount of amniotic fluid surrounding her baby. She was referred to the St. Louis Fetal Care Institute for further testing. Dr. Ed Yang and Dr. Mike Vlastos discovered that Isalya’s unborn baby girl, Nayla, had a bronchopulmonary sequestration (BPS) attached to her left lung, blocking the entire left side of her chest.

“I would have to say out my entire 22 years of living I had never faced something so hard in my life. Being pregnant is scary as it is, but for a doctor to confirm to you that there is a chance that your baby won't make it if the proper preparations aren't met is the worst,” remembers Isalya.

A BPS (also known as pulmonary sequestration) is a piece of lung tissue that develops without being connected to the airways, sometimes inside the lung and sometimes outside of it. The blood vessels going to the BPS also form abnormally. The BPS does not get blood flow like the rest of the lung. Rather, it steals blood flow away from the body via a separate artery. These lung masses can cause breathing problems, infection, or other complications if untreated.

Most BPSs do not cause problems to the fetus, and in these cases, the baby can be monitored throughout the pregnancy, and the BPS can be removed after the baby is delivered. If the BPS is more severe, however, prenatal surgery may be needed. They are a very rare birth defect, and nothing the mother does or has done during pregnancy causes this problem.

Because they were concerned that Nayla’s BPS may prevent her from breathing when she was born, The Fetal Care Institute Team recommended that Isalya have an EXIT procedure to deliver Nayla. The Ex Utero Intrapartum Treatment Procedure (EXIT procedure) is a special delivery performed when it is anticipated that a baby, or babies in the case of twins, will have an immediate, critical problem once separated from the mother at delivery. The purpose of an EXIT is to provide the necessary intervention to the baby before the umbilical cord is cut, avoiding the crisis and allowing for a more stable transition from placental circulation to newborn circulation.

“Every time she moved inside of me I had hope that she was going to be alright,” says Isalya. Doctors continued to monitor Isalya and Nayla with frequent check-ups. “I was terrified. This was my first pregnancy and my first child was going through these hardships before she was even born. I was truly heartbroken,” she recalls. Despite being scheduled for delivery at Cardinal Glennon on June 7, Nayla had a different plan.

At 36 weeks and 5 days, Isalya went into labor. The FCI team worked quickly to arrange for an EXIT procedure to take place sooner at Cardinal Glennon. On May 26, Baby Nayla was delivered via EXIT procedure at Cardinal Glennon.

While she was still being supported by her mother via the umbilical cord and placenta, Dr. Yang was able to make a small opening on the side of Baby Nalya’s chest to help her breathe. The opening in her chest created more room to allow for her chest to expand. Once Nayla was stabilized, the umbilical cord was cut and she was taken to the operating room next door, where the BPS was successfully removed.

“We expected the worst when she was born but she came out breathing on her own and was released from the hospital only a week and a half after she was born,” Isalya happily recalls. Although her lungs are still developing, Nayla is a happy baby who enjoys spending time with her family, especially her father, her grandmother Antoinette and great-grandmother Vivian.


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