Abu Dhabi: From the 12-week fetal scan during which a serious fetal defect was detected to undergoing in-utero surgery, a specialized EXIT procedure at birth, and major surgery to repair his diaphragm at 6 days old, baby Saif’s arrival into this world was fraught with challenges. After a 135-day stay in the NICU at Burjeel Medical City (BMC), Abu Dhabi, the little one emerged victorious, and is set to go home with his parents. Baby Saif’s parents, an Emirati couple from Al Ain, are relieved by the miraculous recovery of their newborn son following a complex medical journey that began even before his birth.

A Difficult Diagnosis

Latifa and her husband were overjoyed when they learned they were expecting their first child after five years of marriage following IVF (In vitro fertilization). Their initial excitement turned to concern at a 12-week scan when it was discovered that the baby had a serious diaphragmatic defect, causing his bowel and liver to herniate into the thorax.

The diagnosis was a blow to the couple. “It was difficult to hear that our baby might not survive due to his complex health condition or that the pregnancy might not be completed,” recalls Latifa.

They sought out specialists who could provide assistance and finally consulted Dr. Mandeep Singh, Consultant, Fetal Maternal Medicine and Obstetrics, Kypros Nicolaides Fetal Medicine and Therapy Center at BMC. Learning that specialized care was available within the country, they decided against traveling abroad for treatment.

As the pregnancy advanced, it was clear that the defect was severe, and this had led to both lungs being severely compressed. The chances of the baby surviving with such a serious defect are around 10-15%. Their only hope was to undergo a complex in-utero procedure called FETO procedure (Fetal endotracheal occlusion procedure), in which a balloon is placed in the baby’s trachea using a fetoscope to encourage lung growth.

Dr. Mandeep leads the team of doctors managing the case. Other members of the team included Dr. Iviano Ossuetta (Consultant and Director of Neonatology), Dr. Mussadaq Inayat (Consultant Neonatologist), Dr. Ahmed Omran (Consultant Obstetric Anesthesiologist), Dr. Shaikh Irfan Basha, (Consultant Otorhinolaryngology, Head & Neck Surgery), Dr. Rajasekhar Cingapagu, (Specialist, Pediatric Surgery), and Dr. Kesava Ramakrishnan (Consultant Pediatric Intensive Care Unit).

When Latifa first heard about the interventional procedure that would take place when her baby was still in her womb, she was filled with fear and anxiety. However, the medical team reassured the couple and they decided to go ahead with the procedure.

Overcoming Challenges

At 27 weeks gestation, the FETO procedure was performed successfully with the help of Dr. Mauricio Herrera (visiting physician and fetal medicine specialist). However, the mother faced a setback when she went into preterm labor shortly afterwards and started leaking amniotic fluid. With careful management, the pregnancy continued, and Latifa stayed in the hospital for the remainder of her pregnancy.

At 34 weeks, when she went into labor, the medical team performed a specialized operation known as EXIT (Ex-utero intrapartum treatment), which allowed the baby to be partially delivered while still attached to the placenta, allowing him to receive oxygen from his mother as the medical team stabilized his breathing before delivering him. During this time, Dr. Irfan Basha punctured the balloon and inserted an endotracheal tube to help Saif breathe. The baby was then delivered and transferred to the NICU. Later, baby Saif underwent major surgical repair of the diaphragm at 6 days old by Dr. Rajasekhar.

For Latifa, seeing her baby in the intensive care unit for premature babies brought mixed feelings of pain, joy, and fear. The couple traveled daily from Al Ain to Abu Dhabi to be by their baby’s side and ensure he received the best care possible. “It was a challenging time. My husband and family supported me, giving me the confidence that this would pass. The hospital felt like a second family, providing us with compassionate care. I am grateful to the UAE for its advanced healthcare system, which allowed us to stay close to our family and loved ones,” said Latifa.

Getting Ready to Go Home

Four-and-a-half months later, baby Saif is all set to go home soon. “We are very pleased that baby Saif’s condition has greatly improved. In the last few months, he has overcome critical health challenges as our entire team worked together to deliver the best care. We are hopeful that we can continue to offer this treatment to any baby in a similar situation,” said Dr. Mandeep.

The Kypros Nicolaides Fetal Medicine & Therapy Center in Abu Dhabi has successfully managed numerous complex congenital malformations. It is one of the first centers in the UAE to perform in-utero spina bifida repair and continues to perform many such successful procedures.

From In-Utero Surgery to 135 Days in NICU: An Emirati Baby’s Incredible Fight for Survival