We’ve heard about fetal surgery. We’ve read stories, seen pictures, known families who’ve had their lives turned upside-down. But have we all thought about how truly incredible it is that modern medicine has brought us to this futuristic place?
Operating on fetuses can help many children with a variety of different conditions from spina bifida, to twin-twin transfusion syndrome (TTTS), to congenital diaphragmatic hernia (CDH). The idea is that many symptoms can be minimized if the birth defect is treated early enough, in the womb, before organs fully develop or before other systems are fully functioning.
In the example of a child with spina bifida, by closing the hole in the fetus’s spine early enough, before the baby begins to produce urine in the womb, the doctors can decrease the chance for further nerve damage in the spinal cord.
For a baby with CDH, if the surgeons can block the hole in the diaphragm early enough, the baby’s lungs can get a chance to develop more normally.
In TTTS, if doctors can sever the blood vessels that connect the two babies, so that the transfer of nutrients is more equal, the baby who is getting less can thrive too.
This is all fascinating and amazing. It’s also (of course) very expensive, and when it doesn’t work, absolutely heartbreaking.
Imagine being the happiest you’ve ever been, pregnant and hopeful, and going into a routine ultrasound and being given the news that your child might not survive or could be born with life-threatening birth defects and chronic health issues. Devastating.
But then the doctors give you a sliver of hope. The tiniest sliver. Surgery while your child still lives in your womb.
The medical miracle of all medical miracles.
It’s scary and nerve-racking, of course, but not as terrifying as having no options to help your baby.
Parents who choose fetal surgery put their lives on hold for months, go through mountains of paperwork, make appeal after appeal to their insurance companies, are counseled through horrific statistics, travel to faraway hospitals, have scary surgical procedures, and spend weeks and months in the hospital. And they also have to prepare for a new life — caring for a medically fragile child after they are born. They do all of this, all the time knowing that, despite their efforts, their baby still might not survive.
Parents do all of this for the slice of hope that they can save their child’s life or make it better than it could be.
Below are three stories on how fetal surgery has affected three different families. All of these families were given the worst possible news at one of the happiest times of their life, and all of these parents, alongside their doctors, took many brave steps to give their kids a chance at living the best life possible.
The fetuses that are chosen to be operated on often have only a very slim chance of survival without surgical intervention. Ali Wichman of Bakersfield, CA, told Scary Mommy that she and her husband found out at their 22-week ultrasound that their baby, Easton, had CDH. CDH is a hole in the diaphragm that allows a baby’s liver, intestines, stomach, and other abdominal organs to move up into the chest cavity which then inhibits lung growth. With the severity of his condition, Easton had only a 1–2% chance of survival, because along with CDH, Easton also had a heart defect and only 5–10% lung volume. Without surgery, he would hardly have a chance at survival.
The surgery that Easton needed (tracheal occlusion surgery) is not FDA-approved, but some insurance companies will cover the expenses on a “compassion” basis if the chances of the baby’s survival would be minimal without it. Ali said that they decided to go to UCSF’s Fetal Treatment Center, which is the hospital that conducted the very first fetal surgery and also specializes in treating CDH.
Ali talked to Scary Mommy about the day of the surgery and said that, in order for it to be successful, Easton needed to be in a perfect head-down angle for them to be able to operate.
Ali says, “He finally moved into position, and they took their chance. They went into his little mouth and put this grain of rice-sized deflated balloon in his trachea. Once placed, they filled the balloon with saline to keep it tight and secure in his trachea. The purpose of this was to occlude his trachea while I was still pregnant so it wasn’t really bothering him, and so that it would create a pressure in his chest cavity to help push the organs back down a little to relieve pressure off his lungs and allow them to grow and develop a little more.”
Their baby, Easton, ended up coughing up the balloon weeks too early and lived for 11 days, enduring several surgeries after he was born. Ali says, “I know in my heart that the surgery helped us. We didn’t think we would have 1 day with him and we got 11. I would do this all again, including the fetal surgery.”
In the end, Ali estimated that the cost for Easton’s care was over $3 billion, which was taken care of by the hospital and insurance companies.
Siobhan Wheelen also found out that their son, Owen, had CDH at their 20-week ultrasound.
Siobhan told Scary Mommy, “It was devastating. And scary. And that entire appointment was a bit of a blur. The tech was chatting away happily and then things just turned and she was quiet. When the doc came and gave us the news, she told us that they would ‘try to keep the baby alive until birth.'” One minute they were ecstatic, and the next, they didn’t know if their child would live long enough to be born.
Siobhan pored over research and any information she could find related to helping her baby, and they also ended up going to UCSF because of their amazing reputation.
The counseling the Wheelans went through before the surgery included learning everything that they could potentially be facing. The doctors warned them that they’d never had a baby with Owen’s severity of CDH survive. He would be in the NICU for 3–4 months, if he did survive. Siobhan says, “Oxygen. Feeding tubes. Delayed growth. All sorts of issues that could last for years to come. Then they offered termination as an option. He told us 80% of families choose termination.”
Siobhan says, “When we left we were in some kind of trance. It took about 45 minutes into our drive home before we could begin to talk. I asked what my husband thought. He didn’t know. And in that moment, I just looked down at my belly, and I just knew it wasn’t time to give up. It was time to fight. I told my husband that I didn’t feel like termination was the path for us. That we needed to exhaust every option, because I couldn’t live with the thought of not knowing if he could have made it if I’d only… I said that if he doesn’t at least we’d know we’d done everything we could for him.”
The Wheelans had to appeal to their insurance company to be part of the study since the surgery their baby would need was not FDA-approved.
Owen made it through his first surgery to place the balloon successfully, and Siobhan told Scary Mommy, “Since I live close enough, they allowed me to go home on bed rest and come back every week for ultrasounds to measure lung growth. By the second week, the doctors were amazed at how much growth there’d been. We had hope.”
At 31 weeks, Siobhan began to go into labor, and the doctors decided that they wanted to try to do the second surgery to remove the balloon and keep her pregnant as long as possible in the hospital. They were nervous but hopeful.
Unfortunately, the doctors struggled with the second surgery because they couldn’t get Owen into a good position. The doctors then decided that they would need to deliver him — but in a very specific way.
Siobhan explained it like this, “Essentially they would put me under, open me up, take the baby’s head and one shoulder out, remove the balloon, intubate him, and then deliver him the rest of the way. I knew that this was a possibility, but up until that point, I had such strong hope that it wouldn’t happen. That moment is when reality just hit me in the face. I started crying and then my nose got stuffy, and I felt like I couldn’t breathe because they put the oxygen mask on me.”
“The next thing I remember was being wheeled to my room. I remember crying and asking if my baby was alive. Then I saw my husband in the hall outside my room, and he smiled and said yes. Seeing Owen hooked up to so many tubes and wires, it was scary. I’ll never forget that first kiss I gave him. I asked the nurse if it was okay. My husband frantically trying to cover my ass which was hanging out the back of my gown. But I couldn’t care less. We were told not to touch him much, his little sensory system was under developed and his body just couldn’t handle the stimulation. It was touch and go for weeks.”
Owen fought through all of the additional surgeries that he needed to have and is now a happy 4 1/2-year-old boy because of the fetal surgery, and because of the doctors who operated on him, and because of his amazing parents.
Jackie Oberio and her husband found out at her 19-week ultrasound that their daughter, Audrey, had myelomeningocele, the most severe form of spina bifida, a birth defect that can cause paralysis. Spina bifida is when the backbone and spinal cord don’t develop properly because of an incomplete closing of the backbone and surrounding membranes. Children born with this condition usually suffer from fluid buildup on the brain, lack of bladder control, and an inability to walk.
Jackie and her husband lived in Baltimore and had to travel to the Children’s Hospital of Philadelphia to another of the world’s leading teams in fetal surgery. For babies with spina bifida, having surgery before they are born can increase their chances of being able to walk because, if the surgery is done before the fetus begins to produce urine, there is a decrease in the damage done to the nerves surrounding the spinal cord.
It has been found that “children treated with open fetal repair have significantly improved outcomes compared to children whose defects are repaired shortly after birth. Specifically, fetal repair reduces the rate of ventriculoperitoneal shunt dependence and Chiari malformation, while improving motor skills at 30 months of age compared to post-natal repair.”
Audrey’s spinal surgery was a success and her parents kept a video diary for her throughout. One touching moment comes when Jackie thinks ahead to the days when she hopes Audrey will be able to stomp her feet at her parents in frustration — something Audrey wouldn’t have been able to do without the fetal surgery.
After their scary surgery, Jackie had to stay on bed rest for 12 weeks until Audrey was born at 34 weeks.
Baby Audrey began therapy right away. Jackie says, “We started physical therapy within a month of coming home from the hospital after her birth. Now that she’s 4, and so functional she’s doing PT about 3 times a month. We also do our own exercises and PT along the way. We were lucky our insurance did cover the costs of the fetal surgery. When we did this in 2013, it was FDA-approved but not all insurance plans covered it. Many moms had to have the hospital contact the insurance companies and plead their case to get coverage.”
“We would absolutely do it all over again even knowing the risks. She’s amazing. When I was pregnant we went to four different hospitals for opinions. We were told she would be mentally slow and have poor quality of life in addition to paralysis. She has partial paralysis, but she clearly leads a very full and happy life. She walks independently with AFO braces. She can walk barefoot in the home. This surgery we believe absolutely made a huge difference. By closing her spine early before she began producing urine in the womb, we preserved further nerve damage. We had the surgery at 22 weeks pregnant. We feel it helped her function much better than the original prognosis stated. We were told she would most likely never walk independent of crutches or a walker and use a wheelchair distance. We were accepting of any outcomes, but we wanted to give her the highest chance of having more function. She is developmentally on par according to her preschool teachers.”
We are lucky to be alive in this day and age where medical miracles happen every day. Fetal surgery can make a real, life-saving difference for children with birth defects, and the technology and science continues to improve. The doctors and parents who fight for these babies are the true heroes in these stories — heroes cloaked in hope, and they share their stories to pass that hope along to anyone else who may need it.