Spine of baby with spina bifida repaired in the womb

by NCN Health And Science Team Last updated on June 20th, 2019,

In a UK first, doctors have used keyhole surgery to successfully repair the spine of a baby with spina bifida while it was still inside the womb. Surgeons at King’s College Hospital say the procedure is not a cure, but could be the difference between some children learning to walk or not.

Sherrie Sharp and her son Jaxson had the operation 27 weeks into the pregnancy.

Spina bifida was diagnosed after the routine 20-week pregnancy scans.

They showed Jaxson’s spine and spinal cord were not forming correctly.

Gaps in the developing spine meant the cord was bulging out of his back and was left exposed to the amniotic fluid in the womb.

This damages the crucial nerves in the spinal cord and could lead to paralysis, a loss of sensation in the legs and problems controlling the bladder and bowels.

The longer the spinal cord is left exposed, the greater the damage.

Sherrie, 29, and from West Sussex, said the news was a shock, but an abortion was a “definite no”.

She decided to have pioneering surgery to correct the defect, although there was the risk of the baby arriving prematurely.

Sherrie told reporters: “I wanted to do the best for my baby, I wanted him to have a better life and there’s nothing wrong with that.”

How the procedure worked

Doctors sedated Sherrie, and the anaesthetic also crossed the placenta to prevent Jaxson, who was still a tiny foetus at this point, from wriggling.

Surgeons made three small incisions in Sherrie’s bump and then a thin camera and small surgical tools were inserted into her womb.

Then, during a three-hour operation, surgeons put the exposed spinal cord back in place and used a patch to cover Jaxson’s spinal cord.

Dr Marta Santorum-Perez, a consultant at the Fetal Medicine Unit at King’s, told reporters: “We are operating on very delicate structures – the foetus’s nerves.

“The foetus is very small and inside the womb, so obviously it’s a very delicate operation.”

Life-changing

Until recently, parents had to wait until a child was born for corrective surgery or find treatment abroad.

But the evidence suggests that operating during the second trimester reduces nerve damage and the long-term health consequences of spina bifida.

At the end of last year, the first in-womb surgery for spina bifida took place in the UK. It involved invasive surgery of opening the mother’s abdomen and uterus to perform the operation.

Mr Bassel Zebian, a consultant neurosurgeon at King’s, said the keyhole approach was better for the mother and reduced the risk of the uterus rupturing in subsequent pregnancies.

He said that operating in the womb also reduced the risk of complications later in life, but could not remove them entirely.

He said: “It’s quite important, because improving the function of the lower limbs may be the difference between someone walking and someone not walking later in life.

“So a significant improvement in a significant number of patients, but not a cure.”

Baby Jaxson arrived early, at 33 weeks, and was looked after in neonatal intensive care at King’s.

But Sherrie hopes the operation has given Jaxson the best start in life.

She said: “He’s got movements in his legs, we were told he’d have minimal movements if we didn’t have the surgery and he wouldn’t be able to move at all.

“I’ve got high hopes for him, from day one he’s done things, he’s amazed us all.

“He makes me proud every day, he’s just a miracle.”

What is Spina bifida

Spina Bifida is the most common permanently disabling birth defect that is associated with life in the United States. It’s a type of neural tube defect (NTD) that occurs when a babies neural tube fails to develop or close properly – the literal meaning for Spina Bifida is “split spine”. Typically occurring within the first 28 days of pregnancy, while the neural tube is forming, Spina Bifida often occurs before a woman knows she is pregnant.

Commonly referred to as the “snowflake condition” of birth defects because no two cases are the same, Spina Bifida can range from mild to severe. The severity depends on everything from the size of the opening to the location on the spine.

What Causes Spina Bifida?

No one knows for sure. Doctors and scientists believe that a complex mix of both genetic and environmental factors act together to cause the condition. Are you an expectant parent? Click here for resources & information that might be of benefit to you.

Can Spina Bifida Be Detected Before Birth?

Yes. There are 3 tests, but, it is important to remember that no medical test is perfect and the results are not always 100 percent accurate. Spina Bifida can be detected in utero by one of the following tests:

A blood test during the 16th to 18th weeks of pregnancy. This is called the alpha-fetoprotein (AFP screening test). This test is higher in about 75–80 % of women who have a fetus with Spina Bifida.
An ultrasound of the fetus. This is also called a sonogram and can show signs of Spina Bifida such as the open spine.
A test where a small amount of the fluid from the womb is taken through a thin needle. This is called maternal amniocentesis and can be used to look at protein levels.

How is Spina Bifida treated?

Spina bifida treatment depends on the severity of the condition. Below are the ways in which Spina Bifida is treated before or shortly after birth.

A child with Meningomyelocele usually is operated on within two to three days of birth. This prevents infections and helps save the spinal cord from more damage.
A child with Meningocele usually is treated with surgery, and more often than not, the child is not paralyzed. Most children with this condition grow up without complications, but they should be checked by a doctor because they could have other serious problems, too.
A child with Occult Spinal Dysraphism (OSD) should see a surgeon. Most experts think that surgery is needed early to keep nerves and the brain from becoming more damaged as the child grows.
Spina Bifida Occulta typically does not require treatment.

Prevention of Spina Bifida

While there is no known cause, it has been shown that women who are old enough to have babies should take folic acid before and during the first three months of pregnancy. Because half of the pregnancies in the United States are unplanned, the Spina Bifida Association asks women to take a vitamin with 400 mcg (0.4 mg) of folic acid each day during the years of their lives when they are possibly able to have children.

Additionally, women who have a child or sibling with Spina Bifida, have had an affected pregnancy, or have Spina Bifida themselves should take 4000 mcg (4.0 mg) of folic acid for one to three months before and during the first three months of pregnancy. Research shows the likelihood of having a second baby with spina bifida is about 3%. It’s important to know that neural tube defects like spina bifida are not entirely understood, and spina bifida is not something that is caused by parents’ actions. It is recommended that individuals with spina bifida and couples who already have a child with spina bifida talk with their OBGYN or genetic counselor about their risk factors and ways to reduce the risk.

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