Parents feel 'blessed' as baby who had in-womb surgery in Abu Dhabi is ready to go home

The parents of a baby girl who underwent spinal surgery in the womb in Abu Dhabi have told of their joy as they prepare to fly her home.

Liz Valentina Parra Rodriguez and Jason Mateo Moreno Gutierrez, from Colombia, had been advised by doctors in their homeland to terminate the pregnancy after a 24-week scan revealed their unborn child had spina bifida, in which the spine and spinal cord do not develop properly in the womb.

Another Colombian doctor advised the couple to consider spina bifida repair before the baby was born. This second opinion proved crucial, and led them on a journey from South America to the UAE capital this year.

A team at Burjeel Medical City's Kypros Nicolaides Fetal Medicine and Therapy Centre performed the procedure in June, six months into the pregnancy, in the hope it would improve the baby's life.

“Princess Maryam” was born on August 7 after Ms Rodriguez went into labour at 35 weeks.

More than five weeks on, doctors say she has a long recovery road ahead of her, but is now well enough to swap an Abu Dhabi hospital for her family home.

“Our princess Maryam is the best present that we could have ever gotten. God has blessed us with the perfect gift,” said Ms Rodriguez.

“We are extremely grateful to the UAE, Burjeel Holdings and the team for taking care of us and helping us during this difficult time.”

Known as in-utero foetal surgery, the procedure involves making a small incision in the uterus so the back of the baby is exposed to allow the neurosurgeon to repair the spina bifida defect.

It is performed at between 19 and 25 weeks of gestation.

Condition affects one in 1,000 births

Spina bifida is a birth defect that happens when the bones of the spine do not form, and this leads to the spinal cord being left exposed to amniotic fluid.

The condition can lead to serious neurological complications and physical disabilities. The average worldwide incidence of spina bifida is one per 1,000 births.

The Abu Dhabi team carried out the repair and used a synthetic patch to cover the defect after draining the amniotic fluid from the uterus. The fluid was then reintroduced and the uterus was closed back up and the baby remained in the womb for the rest of the pregnancy.

Doctors said it is too soon to gauge the long-term success of the surgery, but Maryam’s bladder is functioning well and her leg movements are normal.

“The spina bifida repair was intact and hence the in-utero procedure is deemed successful,” said Dr Mandeep Singh, director of Kypros Nicolaides Fetal Medicine and Therapy Centre.

“Baby Maryam is displaying positive signs of recovery. Although it's still early to predict the full extent of her recovery, the initial indicators are promising.

He said ultrasound and MRI tests had suggested the baby's brain looked normal, with no sign of a fluid build-up. This is a common complication in spina bifida cases and would require a shunt procedure to drain the fluid.

“We are already in touch with a team of doctors at our partner organisation Colsanitas Clinic, Colombia, and will hand over care of baby Maryam once she returns home to Bogota, Colombia,” Dr Singh said.

“She will need to undergo follow-ups with a paediatric urologist, paediatric neurologist, and physiotherapist.”

Although spinal surgery is not a cure, it can make a big difference to a child's life.

If left untreated – and depending on the severity of the condition – a baby born with spina bifida is at risk of developing complications such as orthopaedic problems or issues with bowel and bladder control.

Despite its risks, early intervention through foetal surgery is said to improve outcomes.

“We fully understand that Maryam will need medical attention for the next few years, but we will do whatever we can to support her,” said Ms Rodriguez.

“We are very thankful to everyone for blessing our daughter.”