The first few months of Patrick’s life were difficult. He underwent two operations within 48 hours, one to close his back at just one day old and the second in order to alleviate the pressure on his brain caused by hydrocephalus.
Patrick was born with spina bifida, a birth defect that occurs when the bones in the spine don’t form properly around the baby’s spinal cord. Babies with spina bifida will often develop hydrocephalus which is a build-up of fluid on the brain that can cause the head to swell.
It is not known what causes the defects and they came as a bolt from the blue for mum of three, Kimberley Smith and her husband, to find out at their second scan at 23 weeks their baby would be born with the conditions.
Having Googled spina bifida, and seen a host of grim images, it took a lot of courage for them to get in contact with Spina Bifida Hydrocephalus Scotland (SBH Scotland). The Herald is backing the charity with our Christmas appeal this year, and urging readers to support its work.
“I had a great pregnancy, I was so healthy, no sickness, taking all the vitamins I needed to, no signs of anything so it was just a complete shock. We didn’t see it coming. I had my older sons when I was a teenager and early twenties so I was more aware at 30 that things could go wrong but that still didn’t prepare me for it," Kimberley says.
“We didn’t know what spina bifida was, what the severity was, anything like that. I phoned SBH Scotland and they came out to the house to meet me while I was pregnant and by then I’d had a few appointments so I was getting to grips with it.”
Still the couple were having to deal with a lot of medical professionals and impenetrable terminology. “Doctors talk to you in a way that’s very clinical, just setting out the facts whereas the charity were talking about people they knew with Spina Bifida, babies they knew with the same severity as Patrick and they were fine. They spoke to us like a person rather than a patient,” Kimberley adds.
From birth, Patrick was assigned a dedicated support worker, Fiona, who helped Kimberley complete a Disability Living Allowance form while still in hospital so that it could be confirmed as soon as possible as well as helping the family with other financial aid.
Soon after, Fiona invited the whole family to attend a family support group in Fife where a crèche is available for kids while parents can have a cup of tea, a cake and a chat.
“Since I’ve had Patrick I’ve been to all the support groups. The best thing about the whole experience has been speaking to other mums and dads who know what you’re talking about and how you’re feeling. It’s been a massive support, makes everything a bit brighter.”
Patrick's conditions are life-long and complex. Each child is different but for him they mean he is paralysed from the waist down, he has to be catheterised twice a day and will face a lifetime of bowel issues.
Donating to SBH Scotland through the panel on this page helps to fund support for children like Patrick and their families, including events, providing support and relief for parents. It can also help to provide resources like the zipzac, which helps children with mobility limitations in their hips and legs to move around freely.
“SBH Scotland gave us a loan of a zipzac and that has made a massive difference to Patrick’s life," Kimberley says. "Because he’s paralysed from the waist down, he can’t walk so now that he’s in the zipzac he’s a non-stop mover.”
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