A Renton baby who was diagnosed with spina bifida is now thriving after undergoing a pioneering operation in the womb.
Gemma and Joe McSherry were offered a termination and were warned their baby might have a poor quality of life when a scan showed little Sophia had spina bifida and hydrocephalus (water on the brain).
But after undergoing fetal surgery in Belgium, little Sophia was born four weeks early but thriving.
Now seven months old, her proud parents have opened up about her story in a bid to give hope to parents in the same position.
Mum Gemma said: “We had been trying for a baby and had a miscarriage last April. I found out I was pregnant with Sophia quite early on.
“When we went for our 12 week scan everything was fine. But it was at the gender scan that we found out she had fluid on her brain.
“The nurse couldn’t really tell me what that meant and I had to see the consultant the next day.
“We were sent up to Paisley and that was where we found out that she had spina bifida, a condition where the spine has not closed properly - so is exposed.
“At that stage they gave me two options; to terminate the pregnancy, which wasn’t even an option for me or my husband, or to continue with it.
“They give you the worst case scenario, that she might not have any quality of life, she might not be able to walk.
“Things you never want to hear as a parent.
“Finding out about Sophia’s condition felt like our world came crashing down. I found out that morning that I was having a girl. I’ve already got a wee boy, JJ, so it would be perfect.
“I was devastated. I broke down.”
It was at this stage that Gemma and Joe discovered that fetal surgery - operating on Sophia whilst in the womb - could be an option.
However it meant travelling to Belgium during the height of the Covid-19 lockdown and leaving JJ, two, back in Scotland.
Gemma continued: “There is a page on social media called the Fetal Surgery Page.
“It’s basically all the mums who are thinking of going through the surgery or who have had it.
“I spoke to a lot of mums on there and that really, really helped me.
“We decided to go ahead with the surgery in Belgium, but it was really scary.
“They give you an ultrasound, they take blood and they do another MRI.
“After that they can turn round and say to you yes or no. Before we went to Belgium we got a phone call from the professor who does it. He basically told me that the surgery wouldn’t be much of a success for my daughter, because her lesion is quite far up her back.”
Thankfully Sophia’s surgery was successful, as was the surgery she required to drain the water from her brain and she was born healthily four weeks premature on April 14 - weighing 6lbs 3oz.
Speaking from the family home in Alexander Street dad Joe said: “Sophia is doing great, especially considering what we were told the night before we flew out.
“She’s exceeded all expectations.
“Her lesion was a lot bigger than other people’s. It’s almost the whole base of her back.
“But she’s got less problems than many of the other babies.”
And the dad is now keen to highlight the quality of life children born with spina bifida can enjoy - after members of the Facebook support group shared harrowing tales about being urged to terminate their pregnancy.
Joe added: “One of the main messages we’d like to get out is that spina bifida is a livable condition.
“When we found out, we were distraught. We didn’t have a clue what her standard of living was going to be like.
“We are on two Facebook pages and quite a lot of folk have almost had their arm twisted into getting a termination.
“They are told their child won’t have a quality of life, won’t have their own independence.
“The fetal surgery is amazing.
“It’s something you have to weigh-up on a personal level. You have to research it and find out if it would suit you.”
And Joe was also quick to pay tribute to the NHS, without which he admits his daughter may not be enjoying the same quality of life.
He added: “All we had to pay for was my food whilst we were in Belgium.
“Everything else; travel, accommodation was all paid for. We couldn’t have afforded that ourselves.
“One of the nurses in Belgium told us that almost everyone who got fetal surgery there was British.
“Europeans don’t get the help that we get.
“They have healthcare, but they don’t have the NHS.
“I don’t think we could be any more grateful for the NHS and what they have done for us.”
