Jaqueline Schumer stands sideways in her bathroom mirror to capture her bulging belly with her phone for a TikTok video about an upcoming surgery for her in-utero daughter, who was recently screened for glutaric acidemia (GA).
“When you find out you have to birth your 23-week GA baby so she can get spinal surgery and then put her back in your body so she can grow another 14 weeks and you can birth her again,” the caption on the video reads.
In another video, she shares interesting facts about the successful open uterus surgery to treat her daughter’s spina bifida.
Though the first in-utero surgery to treat spina bifida was successfully performed in 1997, according to the Children’s Hospital of Philadelphia (CHOP)—a leader in spina bifida research—it is a complicated procedure and not widely known as a treatment option. Researchers hope to make it less invasive in the future, reducing the associated risks.
According to Insider, TikTok posts that use the hashtag #spinabifida have 211 million views, but few of these videos explicitly mention foetal surgery. In comments on Schumer’s TikTok video, viewers expressed their amazement at learning that such surgery was even possible.
“I wish someone was around answering all of the questions I had when I was going through this process,” she told Insider in a recent interview. “It would have really helped me to see other people’s success stories of babies that were born after surgery and are finally walking.”
Eighteen weeks into her pregnancy, the 28-year-old creative freelancer based in Florida got tough news. Her in-utero daughter had spina bifida, a condition where the spinal cord doesn’t close completely leaving the spine and nerves exposed and prone to nerve damage that can lead to a host of difficulties from limited mobility to early death. About one in 1,500 babies are diagnosed with spina bifida each year in the U.S., according to CHOP.
As Schumer experienced, the initial diagnosis is shocking and often leaves parents contemplating only the worst-case scenario. But each case of spina bifida is different; specialised treatments are available, and children with the condition can also live to lead happy lives, according to the National Library of Medicine.
Schumer was one of the few lucky women who was quickly connected to specialists who provided both a specific diagnosis and, most importantly, treatment. In most cases, abortion is recommended, and parents who are hesitant to abort can be left to do their own research to find a positive solution to their child’s condition.
Schumer is helping put treatment options and positive outcomes for spina bifida in the public sphere.
She shared her own process from the initial diagnosis to treatment—a pioneering surgery that made her baby among the ‘twice born’—mentioned on her personal blog. In June, doctors removed Schumer’s uterus, opened it up, and operated on her daughter, closing the little one’s spine to prevent further nerve damage. Schumer has been on bed rest since the successful surgery, recovering and gestating her daughter until she can be born again full term via caesarean section.
Schumer told Insider in September that she was recovering well. Being on bed rest made her “antsy,” but she was content with treating her daughter’s condition.
“It felt like we were doing something for my daughter, which was more relieving for me than just sitting around and waiting,” she said.
She wants other women to know they have the same option.
“If you have any questions about my experience, the diagnosis, our surgery, or anything, please feel free to leave comments or send me a message and I would be very happy to address them!” she said on her July 10th blog post.
Bridget Ryder is Spain-based writer. She has written on politics, environment, and culture for American and international publications. She holds degrees in Spanish and Catholic Studies.