A Scots mum was left suffering from PTSD after witnessing her tiny baby battle two life-threatening conditions.
Nicola Carey, 36, from Whiteinch in Glasgow, gave birth to son Beau in February 2020, just a month before the coronavirus outbreak. But within weeks, Beau was diagnosed with two illnesses so rare that doctors say they are not even in medical journals.
Nicola had noticed that her newborn was struggling to feed and Beau was quickly referred to a paediatrician and then placed under neonatal care where medics did biopsies and placed him on a feeding tube.
Soon after, Nicola and her family received the heartbreaking news that Beau had Shah-Waardenburg syndrome - a genetic condition that can cause potentially permanent hearing loss and changes in pigmentation of the hair, skin and eyes, - as well as Hirschsprung's disease, which causes infants' poo to become stuck in the bowels.
Speaking to the Record, Nicola 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 continued: "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 playmat 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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