Sheffield toddler born with Hydrocephalus soldiers on despite undergoing his 19th operation
A Sheffield toddler born with Hydrocephalus is continuing his battle despite recently undergoing his 19th operation – now his family are sharing their story to raise awareness of the condition.
When Leigh-Anne Lomas, 32, from Stradbroke, went for a routine scan at 20 weeks pregnant she and her husband Craig, 31, were shocked to learn that the ventricles in their unborn son’s brain were severely enlarged.
After speaking with a consultant at Sheffield's Jessops Wing, the pair were informed that their baby had hydrocephalus, a potentially fatal condition that was causing his skull to fill with cerebrospinal fluid and his head to expand.
Now, Leigh-Anne has opened up about her and Craig’s journey in a bid to raise awareness for the somewhat-unknown condition which is said to affect 1 in every 1,000 babies.
Leigh-Anne, who is also mum to nine-year-old Faith and Summer, six, said: “After seeing the consultant I was offered a termination, it was like our world had been turned upside down at that point. We'd already done a gender reveal and decided that we were going to call him Claye, his sisters knew about the pregnancy and were excited too.
“He’d been kicking from about 15 weeks and luckily both myself and Craig were on the same page. I wasn’t going to do that – we decided to let nature take its course and if Claye decided he wanted to go then that was it.”
Thankfully Claye survived in the womb and was delivered by caesarean six weeks early on September 28, 2018.
However, he was not out of the woods just yet and at just over a week old Claye was taken into surgery to have a shunt fitted into his brain to drain the excess fluid, allowing it to flow through the shunt and into his tummy where it would be absorbed into the bloodstream and relieve the pressure on his brain tissue.
“He needed some help with his breathing but cried and was able to hold his own straight away,” Leigh-Anne said. “I was then able to give him a cuddle and a kiss before they rushed him off for a brain scan.
“Claye was still in Jessops at one-week-old, his head was quite big and he was an OK weight so they put him forward for shunt surgery. He came back really well from his first surgery and we were able to bottle feed him. At that point Craig and I thought we had made a fuss over nothing.
“We took him home and he was just like a normal baby. His head was really heavy and he had no head control so couldn’t turn his head we had to do that for him, but he seemed happy and content. In our eyes we were thinking that he wouldn’t need another shunt operation until he was much older.”
But just a month later Claye’s condition deteriorated and he was rushed for surgery as the original shunt had become blocked.
Now at just one-year-old Claye has spent much of his time in and out of hospital and is under the care of staff on ward 5, the neuroscience ward, at Sheffield Children’s Hospital.
Leigh-Anne says the family have learnt to take each day as it comes.
"It sounds funny but in the pregnancy, you’ve got no-one to look at. But, now he’s here, he is happy a lot of the time and giggles at his sisters. Developmentally he is behind but I’m so glad we’ve got really good support from ward 5 at Sheffield Children’s Hospital.
“They know him so well and are watching him grow up. I’m just reluctant to go far out of Sheffield as we’ve got such an incredible hospital on our doorstep. Despite Claye being in hospital over Christmas, we were able to spend it as a family.
“The staff couldn’t have done more. The nurses, ward manager and support worker all worked on Christmas Day and set up a table where we had dinner. They just went over and above to make sure even the girls were happy, they just smiled all day – I feel like if you were to ask them they’d say it was the best Christmas they’ve had. They just helped make the best out of a bad situation.
“Every day is a new day for us,” Leigh-Anne added. “Claye has regular checks with the hydrocephalus nurses and we’ve had great support from our friends. They actually made Claye t-shirts and took part in a sponsored walk around Rother Valley. They surprised us at the Sword Dancer, in Handsworth, and handed us a cheque for £6,000 which is going to be used to make Claye a sensory room.”
Claye is currently doing well at home and is on antibiotics for a wound infection.
The family say they have also been supported by both the Shine charity and SHASBAH (Sheffield Association for Spina Bifida And Hydrocephalus), which holds monthly playdates for parents to meet other families in a similar position as them.
Shine is holding a Hydrocephalus awareness week between February 7 and 13. For more information visit: www.shinecharity.org.uk/get-involved/hydrocephalus-awareness-week-2020