A Glasgow mum opened up on battling post-traumatic stress disorder (PTSD) after her newborn was diagnosed with two rare, life-threatening conditions.
Nicola Carey gave birth to her son Beau in February 2020. Baby Beau was struggling to feed so doctors quickly conducted biopsies and placed him on a feeding tube.
Within weeks he was diagnosed with Shah-Waardenburg syndrome; a genetic condition that can cause potentially permanent hearing loss and changes in pigmentation of the hair, skin and eye. Medics also discovered that he had Hirschsprung's disease, which causes infants' poo to become stuck in the bowels.
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The Daily Record reports that the illnesses are so rare that doctors told Nicola, 36, that they aren't even in medical journals. Nicola, from Whiteinch, has opened up on her struggle to cope with learning about her son's life-limiting conditions.
She said: "I was diagnosed with PTSD and post natal depression after Beau was born. I felt so isolated.
"Having a newborn baby is hard enough, but with him being sick and everything happening in lockdown, it was so daunting and hard to take in. He was in and out of theatre all the time.
"At one point, doctors thought they were going to have to do major surgery on his throat which included a rib graft and there was a risk of death - so I had to sign a form saying I was happy to do it if it was going to benefit him."
Now two-years-old, Beau has undergone 18 operations and was fully discharged from hospital in December last year after receiving treatment and care often lasting months at a time. Doctors have ruled that nothing can be done to improve Beau's conditions.
He can't hold his head up, sit unaided, crawl, walk or talk - and he is completely reliant on medication, a feeding machine and 24 hour care. Nicola, who has given up her job as an airline supervisor at Jet2 to become her son's full-time carer, is now determined to find the strength to help her son reach as many developmental milestones as possible.
She added: "Beau can be fine one day then really unwell the next. His condition changes so much within the space of 24 hours.
"He can be at his highest and then at his lowest. The myelin coating from his spinal cord to his brain hasn't fully developed.
"This is causing developmental and neurological delays. He's going to be three in February but developmentally he's only at the age of one and a half."
She added: "I don't know if he'll go through mainstream or a special needs nursery. I don't want him just to be left lying on a play mat with kids trampling on him.
"That's my worst nightmare. I just don't know what the future holds.
"I really want to see Beau gain some independence. My focus is to get him talking and even sitting up would be a bonus.
"As a mum, my main goal is to secure the best life for Beau as I possibly can."
In the meantime, Beau's family is fundraising to raise funds for treatment including physiotherapy and hydrotherapy which may bolster his mobility. They are also taking on a sponsored stadium walk round Ibrox, Parkhead, Hampden and Firhill on September 10 to drum up extra support for the tot.
If you would like to support Beau's fundraiser, click here.
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