While most expecting parents plan for their baby to enter the world they probably think of: potty training, baby’s first tooth, college tuitions etc. When Laura and Aaron Martin were planning for their daughter, Grace to enter the world they learned she had a rare medical condition in utero.
Grace had a lymphatic malformation, meaning she had a large mass on her neck blocking her airways. There is no cause for the condition. Laura was a healthy pregnant woman and was even taking aerobics classes until she was eight months pregnant.
“We found out at her 18 week ultrasound,” said Laura Martin. “We immediately felt fear. We didn’t know what was going on.
Not many doctors do. As suggested by their doctor in Pensacola, they went to Texas Children’s Hospital where they found out they would need to do an EXIT procedure, which the surgeons perform while the fetus is still attached to the umbilical cord and then they deliver the baby. The Texas Children’s Hospital is one of the few hospitals in the country that specializes in fetal surgery.
“There have only been about 25 cases in the past 10 years,” said Dr. Cass, one of Martin’s surgeons and director of Texas Fetal Center.
Going to Texas was a slight comfort to Martin since she has family there.
The decision to proceed with an EXIT procedure is not taken lightly. Only after several evaluations is it even considered. The reason being is that it is a risky surgery.
“The mother has to be under deep anesthesia because the baby needs to be relaxed,” Dr. Cass said.
Martin and baby Grace came out of successful surgery Friday, July 29. Surgeons removed the mass, about 10 cm. and inserted a device into her throat to keep her airway clear. She still has to return to Texas Children’s Hospital to receive sclerotherapy every eight weeks. It helps to shrink what is left in the tongue, which cannot be operated on. The Martins actually just returned from Texas earlier this week.
“We’re there about 12 to 14 hours a day,” Martin said. “My husband and I joke that we work a nurse’s shift.”
Now, at almost four-months-old Grace is eating on her own. She’s proving each day that she is a fighter.
“She has a spit-fire attitude,” Martin said. “But she smiles a lot and she’s good natured.”
This Thanksgiving is even more special to the Martins.
“It’s been an emotional roller coaster, but it’s been worth it.”
“I’m thankful for the doctors that suggested Texas Children’s Hospital,” Dr. Cass said. “We’re doing the very best we can.”