A mother has revealed how she knew something was wrong with her daughter after she was born with an “odd shaped” head.
But despite repeatedly raising concerns, Tracey Harney of Holme-on-Spalding-Moor was told there was nothing to worry about.
She said that Isobelle’s head was “long and thin” and measured differently from the rest of her body.
Isobelle, born in May 2020, was a bit more picky than her brother and soon began banging her head against the wall. She also lagged behind in speech and cognitive development, but Tracey was told she was a “Covid baby and she’ll catch up.”
Tracey also noted that her daughter’s head “didn’t have a soft spot”, but a couple of years later, at a children’s party, a chance encounter with a nurse led to a “catastrophic” conversation.
A mother has revealed how she knew something was wrong with her daughter after she was born with an “odd shaped” head. In the photo, Tracey with her daughter.
Tracey said: “She had started nursery at 18 months and they said her behavior showed autistic tendencies, which I thought myself, but the health visitors missed this condition too, you trust them when they say there’s nothing what to worry about.”
‘One summer’s day (last year) we came upon a woman, Naomi, who was looking intently at Isobelle.
“Her behavior is not typical, she smiles a lot and is very imaginative and some people find it strange.”
“But we got talking and she said she was really sorry but she had noticed something about Isobelle. She said that she was a nurse at Great Ormond Street Hospital and that she had worked with children like her.
‘My heart was beating. She said that she believes that she has a condition called sagittal craniosynostosis, the word itself sounding catastrophic. It’s the fusion of the skull and her brain growing around it, and the blows to the head could be from pain.
‘The noise stopped and my heart started to beat faster and the tears started to fall. But more than anything I felt relief, I felt heard.’
With Naomi’s help, Tracey and her husband Mick soon received help from Headlines, who said their GP would need to refer them to a specialist hospital. But Tracey said this wasn’t easy.
She said: “They googled the condition and told me the only thing they could do was refer me to the nearest hospital, even though I begged them to refer me to any of the specialist children’s hospitals that treat this condition.”
But despite repeatedly raising concerns, Tracey Harney (pictured with Isobelle), from Holme-on-Spalding-Moor, was told there was nothing to worry about.
She said that Isobelle’s head was “long and thin” and measured differently from the rest of her body.
Isobelle (pictured), born in May 2020, was “a bit pickier” than her brother and soon began banging her head against the wall. She also lagged behind in speech and cognitive development, but Tracey was told she was a “Covid baby and she’ll catch up.”
“If left untreated, children with this condition are at risk of seizures, vision loss, pressure on the brain, and brain damage.”
Contacting Alder Hey Children’s Hospital, they eventually managed to get Isobelle referred to their care.
It was soon confirmed that the two-year-old had sagittal craniosynostosis and was likely to be operated on.
Tracey added: “It was all traumatic. I’m thankful we’re in charge of Alder. Hi, they’re lovely.
We have opted to have the surgery, which will be next month, but they have offered nothing but comfort and reassurance. I felt like they listened to us and made sure everything was less stressful, even down to the accommodation.
“Had this been detected earlier, he would not have needed such evasive surgery, whereas now he will need a full skull reconstruction, but we could have had early intervention.”
She is also on the spectrum and in the United States there are studies that show links between autism and this condition, but it is on a case-by-case basis.
“It seems like there’s a ZIP code lottery limiting people, and there are kids living a life not knowing why they’re having seizures. I don’t want to blame anyone, but I want to see fewer families struggling and we’re still in the middle of it, we’re going through the most traumatic stages.’
The mother of two now wants to raise awareness so other parents “don’t get stuck in limbo.”
She said: ‘Our hopes for the future include resting in the comfort that Isobelle will receive the very best care for years to come, and will grow up to be healthy and happy, something every parent can only wish for.
Tracey also noted that her daughter’s head “didn’t have a soft spot”, but a couple of years later, at a children’s party, a chance encounter with a nurse led to a “catastrophic” conversation.
‘If anything, what I hope our story tells others is that you should trust your gut and keep looking for answers; no question or concern should be left aside.
“I also hope that spreading awareness about craniosynostosis ensures that other families are less likely to be missed and get the support they deserve.”
