Bethan Simpson was midway through her pregnancy — and was becoming increasingly excited to meet her daughter for the first time.
The 26-year-old mother, from Burnham, Essex, in England, had heard her baby’s heartbeat and had been watching her grow on sonogram scans. She had started feeling the baby move inside her belly. And she was hunting for the perfect name.
But during a routine 20-week scan late last year, Simpson learned something was wrong: Her unborn child had spina bifida, a birth defect in which the spine and spinal cord do not properly develop in the womb.
Doctors talked to her about her options: She could terminate the pregnancy or deliver a baby who would need treatment to repair the lesion. Or they could do surgery on the unborn child — something that has been done many times in the United States, but only a handful of times in Britain.
During the operation, surgeons in London would cut open Simpson’s womb, repair the lesion on the baby’s spine and then close it all up and wait for her to enter the world on her own time.
Simpson said she decided she had to do the procedure.
“I physically couldn’t bring myself to consider termination,” she said in a Facebook message Wednesday to The Washington Post. “I feel her kick, kick, kick, and everything else was perfectly normal.”
With spina bifida, the neural tube, which turns into the brain and spinal cord in utero, does not close all the way, leaving the spinal cord and its nerves exposed to toxins in the amniotic fluid, which includes fetal urine, said Scott Adzick, surgeon-in-chief of Children’s Hospital of Philadelphia. The higher the lesion is on the spine, the more nerves are exposed to the toxins, he said.
When a baby is not treated before birth, he or she may be paralyzed from that level down, said Adzick, who is founder and director of the hospital’s Center for Fetal Diagnosis and Treatment. Furthermore, he said, there may be hydrocephalus and brain damage due to hindbrain herniation, which can result in breathing and swallowing issues.
Adzick said fetal surgery is not a cure for spina bifida but that it has been shown to dramatically improve the outcome in patients with the condition.
After extensive testing, Simpson — and her baby — underwent fetal surgery for spina bifida on Jan. 8 at University College Hospital in London, she said.
Days later, she posted a message on Facebook, announcing: “We were a success.”
“Her lesion was small and she smashed surgery like you wouldn’t believe,” Simpson wrote about her daughter. “I’m fragile and sore but as long as she is doing fine that all we care about.”
More than a month after the operation, Simpson told The Post that she does not know what challenges lie ahead for her, her husband and their daughter, who is due to arrive in April. She does not know whether their daughter will have extra needs or require extra care. But she knows she has hope.
“I feel her kicking me all day and night. We see her little legs moving on the scans,” she told The Post via Facebook Messenger. But, she added, “It’s difficult to be sure what outcomes we face.”
And the baby’s name?
Simpson said she and her husband decided to name their daughter Elouise, which means “healthy,” among other things.
“Kinda suited,” she said.