This carries risks, but this operation will mean that I did my best for her. In my mind, there was no choice – I just had to do this. “
After six failed rounds of IVF, Helena almost lost hope of having a second child. But on her seventh attempt she became pregnant and things seemed to be progressing well until the 20-week exam.
There, Helena was informed that her daughter had spina bifida.
“It was a very large legion on the back and half of its spine was exposed. They said that she will probably be paralyzed, incontinent and will need a drainage implant to drain the fluid from her brain later, ”recalls Helena.
“I was beside myself when they told me all the possible consequences of having this condition and I couldn’t stop crying.
“They told me that the likelihood of her walking or moving her legs was very, very low – and that was absolutely devastating.”
Quality of life
Within days, Helena was referred for exams and informed that she was eligible for surgery. At 23 weeks pregnant, she traveled to a specialized hospital in Belgium, which works in partnership with SUS.
A team of about 25 doctors performed the complex operation to repair her baby’s exposed spinal cord and close the hole in his back.
“I knew that if she didn’t do the operation, her quality of life would be very different,” says Helena.
Professor Anna David, a fetal medicine consultant at University College Hospital London, said: “Previously, the baby would have the defect repaired after birth – but now that we can have surgery on the uterus, the defect was closed much earlier, so that means there is less damage to the spine.
“This increases the chances that the child will be able to walk and have more control over the bladder and bowel.”
Helena gave birth to her daughter Mila – short for miracle, or miracle, in Spanish – at Great Ormond Street Hospital, three months after the surgery.
Mila still has some fluid in her brain, but so far it shows signs of good development.
“She can move her legs,” says Helena, “and she has sensitivity in her toes, it is absolutely incredible.”
“I am very grateful to the surgeons who did this operation because her life would be very different without her.”
Spina bifida, which affects about 1,500 pregnancies a year in the UK, prevents the spine and spinal cord from developing properly.
It can cause paralysis, bowel, bladder and kidney problems.
But if surgeons can operate between 23 and 26 weeks of pregnancy, instead of after birth, it means a much better outcome for the baby.
The procedure involves specialists from University College London Hospitals, Great Ormond Street Hospital for Children and University Hospitals Leuven, Belgium. Thirty-two babies have undergone the procedure since January 2020.
Professor Stephen Powis, medical director of the NHS England, said it was just one example of the innovative treatments offered by the NHS.
“In addition to fighting a global pandemic, the NHS continues to develop and offer these pioneering services and to be present to patients.”
Kate Steele, Shine’s chief executive, who offers counseling and support to families affected by spina bifida and hydrocephalus, said: “We hope that all families that can benefit from fetal surgery will have the opportunity to find out if the surgery is right for them. them, and that they are supported by their local service, as Helena was. “