We’d like to take a moment to wish a very special first birthday to Luelle Ross, who was born once on December 3, 2013, and then again on March 7, 2014.
Luelle received fetal surgery, a relatively recent medical innovation that started in the late 1990s. It involves serious risks to the baby, risks to the mother, and can possibly result in early delivery. But if the surgery works, it can dramatically improve the quality of life for the baby, and in some cases decide whether or not they survive.
Out of the more than 500 women evaluated annually at The Children’s Hospital of Philadelphia (CHOP), approximately 150 are selected to be candidates for fetal surgery at the CHOP Special Delivery Unit—an extremely risky procedure where surgeons operate while the baby is still in the womb.
In a sense, these babies are born twice. Once, through the “EXIT procedure’’ (ex utero intrapartum treatment procedure) that allows surgeons to operate on the target area of the fetus, and twice, if the baby is successfully operated upon and returned to the womb, in the baby’s final delivery. Hopefully this occurs many weeks later, when the child is full term.
So why would parents undergo such a risky procedure when their babies are still in the womb? Precisely for that reason: The child is still growing. There is potential to correct a potential problem while the child is still in development and significantly improve the quality of their life, which, to the parents who decide to embark on this journey, merits the risk of the surgery.
But it’s all about the timing.
The three-part PBS documentary series Twice Born: Stories from the Special Delivery Unit, premieres March 31 at 8 p.m. and follows four families who travel from across the country to have their cases evaluated by the pediatric specialists at CHOP’s Center for Fetal Diagnosis & Treatment and the Fetal Heart Program.
Dr. Scott Adzick, Dr. Julie Moldenhauer, Dr. Holly Hedrick, Dr. Mark Johnson, and Dr. Nahla Khalek, specialists in the unit who are each featured in the documentary, take particular care to outline the potential risks and outcomes of each procedure with the families.
“We don’t know all the answers, and we have to share some of that uncertainty with the patients,’’ Hedrick said in the series.
Although the doctors in the documentary say the ideal outcome is that the baby can return to the womb to safely complete the pregnancy—even this second leg of the pregnancy carries its own risks. Mothers are very likely to deliver early.
But ultimately, according to Dr. Johnson, the goal is to “beat nature at its own game, and make lives better for kids who otherwise would be facing kinda crummy futures.’’
Meet Shelly and Bobby Ross, two parents from South Hamilton who took that risk with their daughter Luelle.
A 26-year-old mom of a 14-month-old, Shelly had big plans for her 18-week ultrasound. She and her husband, Bobby, were going to find out the gender of their second child. The couple, who live just north of Boston, asked their ultrasound technician to put the gender on a sheet of paper, so they could open the envelope over a celebratory breakfast after their appointment.
But there was more to that day than a gender reveal.
“When we found out—we’ll never forget the day—October 28, 2013, that’s when we were 18 weeks in to get the gender,’’ said Bobby told Boston.com before the documentary aired. The ultrasound technician asked the Rosses to wait in the waiting room. Instead of handing them the gender of the baby, she got their doctor on the phone.
Their daughter had spina bifida, literally a split in her spine that occurs in the womb when the spinal column fails to close. According to the Spina Bifida Association, this condition, which results from a combination of environmental and genetic factors, is the most common permanently disabling birth defect in the country. Children who are born with the most severe form, myelomeningocele, usually have nerve damage that result in partial paralysis depending on how high up the split occurs.
“Having that bomb dropped was so hard,’’ Bobby said. “The doctor was listing off all these problems…’’ But within four days of the diagnosis, they were enroute to CHOP, in order to see if they qualified for fetal surgery.
“It was scary and exciting at all the same time—not in any medical situation do you like to be one of the first to do something, and we were in the forefront to do that,’’ Shelly said. “There still was a sense that even if our baby didn’t do well, it would be devastating, but I think I would still feel like if our experience would be able to advance medicine for those after us, that would be special to us still.’’
Not everything went smoothly for the Rosses (watch for more details) But it turns out, the Rosses may have been some of the lucky ones. Luelle’s initial prognosis was paralysis from the waist down, urinary and bowel issues, and club feet, to name a few. Today, her mother said she really isn’t being treated for any of those things. She’s pulling up to a stand and even taking steps while she’s holding onto furniture.
“We do interact with certain doctors that don’t have a positive view on it, because they’re taking care of kids that have had fetal surgery that didn’t have as positive of an outcome as our daughter’s,’’ Bobby said. “[They say] not everyone turns out as great as your daughter, she’s a bit of an outlier…it’s hard to be the outlier.’’
At no point are the results guaranteed. Because even with fetal surgery, there is no cure for spina bifida. Luelle is still being watched for hydrocephalus, a build up of fluid in the brain that affects as many as 90 percent of children with the condition.
“[Spina bifida is] called the snowflake condition, because everyone can have a different outcome,’’ Shelly said. “It’s hard for us and with our friends there are times I almost feel guilty that she’s doing so well. I ache for friends who aren’t doing well or who have even lost babies.’’
Throughout their journey, Shelly and Bobby said it was important to confront the reality that they might lose their daughter. And in Twice Born, there are certainly many emotional moments that leave the viewer wondering how they could possibly go through such an intimate experience on camera.
“The first day it was kind of weird, but pretty quickly it became part of the experience,’’ Shelly said. “We became friends with the crew, and they were really encouraging and part of the journey with us.’’
The day before PBS called, a few days after the spina bifida diagnosis, Shelly said she was watching all the videos on fetal surgery, crying, and wondering whether they would go through with the surgery. “But watching other families [who had experienced this] was so encouraging to me while I was in the midst of all of this….It’s not just about being on the special, it’s about encouraging other people to share our story who come after us.’’