- Jacqueline Schumer was told her unborn baby had spina bifida at her 16-week checkup.
- The birth defect can cause complications including trouble walking and fluid buildup in the brain.
When doctors told Jacqueline Schumer that her unborn child had a birth defect on its spine and floated the option of a termination, she was shattered.
"It felt like that moment where your stomach drops on a rollercoaster," Schumer told Insider. "We lost that hope and happiness that we had for a healthy pregnancy. It was so all of a sudden. It was devastating."
If she wanted to continue with the pregnancy, she was told, her baby would be born with spina bifida, a condition where the spinal cord does not develop completely. About 14% of children born with the most severe form of spina bifida die before the age of 5, and those who survive may need assistive devices to get around.
However, doctors said they could give the child a chance at walking independently someday — if Schumer was willing to undergo a rare and complex fetal surgery.
Fourteen weeks before her due date, Schumer lay on an operating table as doctors pulled out her uterus and made a delicate incision to operate on her unborn baby. The fetus was then returned to her womb, where it will remain for the final trimester of Schumer's pregnancy.
Although spina bifida can cause severe complications, including paralysis and neurological differences, many children born with the defect go on to live full lives, according to the National Library of Medicine, Still, doctors will often mention termination of pregnancy as an option for women whose fetuses are diagnosed with spina bifida or another birth defect at prenatal screenings.
Schumer, who is a 28-year-old freelance writer based in Florida, decided not only to go ahead with the fetal surgery, but also to share her experience on TikTok to raise awareness of spina bifida and what can be done to treat it. Her video quickly went viral, receiving over 4 million views.
@jacqschumer Then be on bed rest for 107 days in another state I’d do anything for her #pregnancy #csection #babynames #spinabifida ♬ gford._ gets no maidens - $avøry-$adisticpai • Follow Me
Schumer thought the defect might mean she would lose her baby, until she learned about fetal surgery
Schumer told Insider the first trimester of her pregnancy was completely smooth. She said she barely experienced morning sickness and felt she was having a pretty standard, healthy pregnancy.
It was so smooth, she never even contemplated the diagnosis she received at her 16-week appointment: her baby had a type of spina bifida called myelomeningocele. It's the most severe form of the birth defect, characterized by a fluid-filled sac of spinal nerves that bulges from the fetus's spine.
Spina bifida is a birth defect where the spinal column doesn't develop completely, leaving parts of the spinal cord and nerves exposed. About one in 1,500 babies are diagnosed with spina bifida each year in the US, according to the Children's Hospital of Philadelphia (CHOP), a leader in spina bifida treatment and research.
Depending on where the defect is located on the spine, children with spina bifida may experience complications including trouble with mobility, incontinence, and fluid in the brain. However, breakthroughs in treatment have made it possible for people with the condition to live full lives.
In late June, Schumer traveled from her home in South Florida to CHOP's Center for Fetal Diagnosis and Treatment, where the first program dedicated to treating children with spina bifida was founded. After learning about fetal surgery, she decided to move ahead with the procedure, which was scheduled to take place eight days after she confirmed she wanted to move forward.
Doctors removed Schumer's uterus and operated on her fetus before placing it back into her body
On June 29, the day of the surgery, Schumer remembers waking up at 6 a.m. and going to the hospital. She said she felt relatively calm, given that the risks of the surgery were explained to her at length.
CHOP's website explains that the repair of spina bifida requires surgeons to remove the patient's uterus, carefully open it up, and close the exposed area on the fetus's spine. If the fetus's spinal cord and nerves are continually exposed to amniotic fluid in the womb, it can lead to neurological damage.
The sooner surgeons can protect the spinal cord, the less likely the fetus is to suffer further injury. A study co-led by scientists at CHOP showed that children who received fetal surgery for spina bifida were more likely to walk independently compared to those who were treated postnatally.
Schumer told Insider she was overjoyed to wake up and find out that the procedure went well, and her baby now has better prospects for living a happy life with increased mobility than she was likely to have otherwise.
"It felt like we were doing something for my daughter, which was more relieving for me than just sitting around and waiting," she said.
Schumer, now 34 weeks pregnant, has been on strict bed rest for the past 11 weeks, and has a C-section scheduled for the end of September. She told Insider she's been staying at the Ronald McDonald House in Philadelphia and has been permitted by doctors to stand for only 15 minutes per day.
"I get a little antsy, but pain-wise, I'm doing well," she told Insider, saying she was able to come off pain medication five days after the procedure.
Fetal surgery is a relatively recent innovation, so Schumer wanted to share her experience with others
@jacqschumer Reply to @sophaloaf93 explaining this the best that I can! My fluid levels are back to normal and baby is doing great! #fetalsurgery #spinabifida #pregnancy #nicubaby ♬ original sound - Jacqueline Schumer
Schumer said she wanted to share her success story on TikTok because her own searches for testimonies about the surgery yielded few results. TikTok posts that use the hashtag #spinabifida have 211 million views, but few of these videos explicitly mention fetal surgery.
"I wish someone was around answering all of the questions I had when I was going through this process," she told Insider. "It would have really helped me to see other people's success stories of babies that were born after surgery and are finally walking."
The first successful in-utero surgery to treat spina bifida in the US was done in 1997 but the procedure is still considered extremely complex, according to CHOP. Schumer said she hopes to use her TikTok platform and her new blog to inform people about this option, in case it happens to help them.
For more stories like this, check out coverage from Insider's Digital Culture team here and Insider's Health team here.