A concerned mother has recalled the moment she knew something was wrong with her toddler after noticing her daughter's head was a "funny shape". Tracey Harney was worried about the shape of little Isobelle's head when she was born in May 2020, as she says it appeared "long and thin" but medics reassured there was nothing wrong with her baby.
The mum said Isobelle was a "little more fussy" than her brother and soon started banging her head against the wall, the Mirror reports. She also said her daughter was delayed in speech and cognitive development but was told she was a "Covid baby and will catch up".
A couple of years later, Tracey bumped into a nurse by chance at a children's party who gave her some "catastrophic" advice which led to Isobelle being diagnosed with a condition called Sagittal Craniosynostosis. The common birth defect is caused by the bones in a baby's skull not growing properly, which can lead to very serious health complications if left untreated.
Due to the length of time it took for little Isobelle to get diagnosed, the tot, who is also autistic, now requires a full skull reconstruction. Tracey said: "She'd started nursery at 18 months and they said her behaviour was displaying autism tendencies, which I thought myself. But the health visitors missed this condition as well.
"You trust them when they say there's nothing of concern. One day in the summer [last year] we came across a woman, Naomi, who was watching Isobelle intensely. Her behaviour isn't typical, she smiles a lot and is very imaginative and some people find that strange.
"But we got chatting and she said she was really sorry but she had noticed something about Isobelle. She said she was a nurse at the Great Ormond Street hospital and said she'd worked with children like her. My heart was pounding. She said she thinks she has a condition called Sagittal Craniosynostosis - the word itself sounded catastrophic.
"It's the fusion of the skull and her brain growing around that, and the head banging could be because of pain. The noise stopped and my heart started beating faster and the tears began to fall. But more than anything I felt relief, I felt listened to."
With Naomi's help, Tracey and her husband Mick soon got help from Headlines, who said their GP would refer them to a specialist hospital, but the mum revealed that step did not come easily. She said: "They Googled the condition and told me the only thing they could do was refer to the nearest hospital, despite me pleading for a referral to any of the specialist children’s hospitals who treat this condition. Left untreated, children with this condition run the risk of seizures, eyesight loss, pressure on the brain and brain damage."
After contacting Alder Hey Children's Hospital herself, they eventually managed to get Isobelle referred to their care and it was soon confirmed that the two-year-old did have Sagittal Craniosynostosis and surgery was likely.
Tracey said: "It was all traumatic. I'm thankful we are under Alder Hey - they are lovely. We've opted to go for surgery which will be next month, but they have offered nothing but comfort and reassurance.
"I felt like we were being listened to and they made sure everything was less stressful, even down to accommodation. Had this been picked up earlier, she wouldn't have needed such evasive surgery, whereas now she will need a full skull reconstruction - but we could've had early intervention.
"She's on the spectrum as well, and in America there are studies to show links between autism and this condition, but it's case by case. It feels there is a postcode lottery limiting people, and there are children living a life not knowing why they are having seizures. I don't want to blame anyone but I do want to see fewer families struggling and we are still in the midst of it. We are going through the most traumatic stages."
The mum-of-two now hopes to raise some awareness about the condition so other parents are "not stuck in limbo". She said: "Our hopes for the future include resting in the comfort that Isobelle will get the best care for years to come, and she will grow to be healthy and happy, something every parent could only wish for.
"If anything, what I hope our story tells others is that you should trust your instinct and keep pushing for answers; no question or concern should ever be put aside. I also hope that spreading awareness of Craniosynostosis will ensure that other families are less likely to be missed and they get the support they deserve."
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