At 18 weeks pregnant, Candace Schwartz of Leander looked forward to a Feb. 25 ultrasound that would reveal her baby’s gender. That’s when she and her husband, Justin, heard the words expectant parents dread: Something’s wrong.
“The doctor said, ‘We’re seeing a little extra fluid and we want you to see a specialist,’” Schwartz recalled. She was nervous, but “I definitely didn’t get on the Internet and see what it meant.”
The couple did not have to wait long to find out. On March 1, Dr. Sina Haeri, a maternal-fetal medicine specialist with the Women’s Center of Texas at St. Davids North Austin Medical Center, saw fluid build-up in the lungs, stomach and face. The unborn baby the couple calls Emma Grace had a rare condition, hydrops fetalis.
It occurs in about one in 2,000 births, marked by a serious accumulation of fluids that can overtake organ systems and kill half of unborn babies with the diagnosis. But Haeri told the parents he knew of a fix: Surgery on Emma in the womb.
Fetal surgery is a fairly new though fast-developing field of medicine.
Each year, hundreds of fetal surgeries — although likely less than 1,000 — are done out of nearly 4 million births in the U.S., according to various estimates. That makes them uncommon, but the number is growing, experts said, as new technologies spawn better operating instruments and imaging in the womb. At the same time, more doctors are doing the surgeries to correct fetal abnormalities, including such daunting birth defects as spina bifida.
“Thirty years ago, people thought we were crazy to operate on a fetus before birth,” said Dr. N. Scott Adzick, chief of general, thoracic and fetal surgery at Children’s Hospital of Philadelphia and director of its Center for Fetal Diagnosis and Treatment.
But since the first fetal surgery in San Francisco in 1981, such interventions have saved thousands of lives, Adzick said.
Beyond surgery to fix an anatomical problem, he said, cell and gene therapy are expected to revolutionize fetal medicine by possibly curing birth defects, such as sickle cell anemia.
“It is an interesting time in fetal surgery,” said Dr. Darrell Cass, co-director of the Fetal Center at Texas Children’s Hospital in Houston. There, fetal surgery cases rose 225 percent between 2008 and 2012, officials said.
Staying close to home
Haeri came to Austin in October from Texas Children’s. He had surgically placed shunts in fetuses to drain fluid — the surgery Emma needed — about 15 times, he said. But a key difference is he would do her procedure with a St. David’s team that hadn’t done one before.
Typically, Central Texas families seeking a fetal surgeon go to Houston and other cities where trained, multidisciplinary teams are on hand. While some fetal medicine specialists said having such a team is crucial, others said it depends on the procedure.
Dr. Celeste Sheppard of Austin said that although she has done the shunting procedure, she sends patients to Houston — and will continue doing so. “North Austin is not set up” as a center of expertise, said Sheppard, a maternal-fetal medicine specialist.
Haeri had referred the Schwartzes to Texas Children’s for a second opinion, and Cass said doctors there considered surgery appropriate. He was not concerned about Haeri doing the surgery, he said, but recommended that parents always ask the surgeon how many procedures they have done and what the outcomes were. When babies are very sick or cases are complicated, having an experienced team in the operating room is best, Cass said.
“My goal for this town,” Haeri said, “is to offer these minimally invasive procedures here.”
Because the Schwartzes wanted to be close to home and liked Haeri, who is easygoing and casual, they chose to have him do it in Austin.
Without surgery, Emma had just a 20 percent chance of survival, Haeri said. He cited studies that say the shunt treatment increased the fetus survival rate 70 percent to 75 percent.
Doctors in Austin and Houston performed various tests but could not find a cause for the non-immune hydrops Emma has.
“I had a lot of moments where I couldn’t stop crying,” Schwartz said. “I felt responsible because it’s happening in my body.”
Prayers for Emma
The Schwartzes, who have an 11-month-old daughter, put their hopes and fears in God’s hands. “My husband and I kept praying together and it gave us an overwhelming sense of peace,” Schwartz, 26, said.
She had met Justin, now 29, when she was on the dance team and he played basketball at the University of Mary Hardin–Baylor in Belton. They have a network of family, friends and church members. On March 21, Schwartz went in for surgery as an army of supporters waited with Justin.
“I really wasn’t afraid,” she said. “We had so much peace about it. We had hundreds of people praying for us, and … we knew whatever was going to happen it would be OK with Dr. Haeri.”
The surgery is not without risks.
“The risk of death from this procedure is 2 to 5 percent when you start poking these kids,” said Dr. Michael Belfort, chairman of obstetrics and gynecology at Baylor College of Medicine and Ob/gyn-in-chief of Texas Children’s.
Also, premature labor is common, and rupture of the uterus is possible.
In the operating room, Haeri first injected a paralytic drug into Emma to keep her in place. Then, guided by sonographer Shad Demaray, he entered Schwartz’s belly with a skinny, hollow tube to deliver the first shunt to drain fluid from Emma’s chest.
Demaray alerted Haeri that he was within 1 to 2 millimeters — less than a tenth of an inch — of Emma’s heart, which they wanted to avoid piercing at all costs. Everyone in the operating room held their breath while Haeri quickly deployed the shunt, he said. The heart was fine.
He then rolled Emma over to release a second shunt on the right side of her chest. Emma’s lungs expanded.
When Schwartz woke up after surgery, “I just cried I was so happy,” she said. “My husband walked in with a big grin on his face.”
At an April doctor’s appointment, Haeri told her that the shunts remained in place, and “Baby’s looking good.”
Schwartz expects to have a Cesarean delivery before her July 27 due date. Haeri plans to be there — “I’m nosy,” he said — in case he’s needed. He had told the couple they had other options besides surgery, including terminating the pregnancy, but the couple never considered that.
“It was always us fighting for her life,” said Schwartz, who has been blogging at fortheloveofemmagrace.blogspot.com. “There was never any option but do whatever we could for her.”
Mary Ann Roser has provided in-depth coverage of Central Texas health and medical issues since 2000. Her training includes national fellowships at the Massachusetts Institute of Technology, the U.S. Centers for Disease Control and Prevention and the National Library of Medicine. Her awards include a first place for 2011 specialty reporting from the Texas Associated Press Managing Editors.