Wiltshire Publications

Mum raising awareness of baby’s rare condition after diagnosis battle

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A WESTBURY mum has stressed to new parents with concerns about their baby’s head shape, the importance of researching and pushing medical professionals for a diagnosis. 

Delcey Orchard-Smith says it took over two months and countless appointments to confirm her newborn son, Alex, had a rare condition that if left untreated, could lead to serious disability or even death.  Delcey wants to raise awareness of craniosynostosis, which means the suture in the head is fused before birth when it should be open to allow the skull to grow with the brain. Babies with the condition can present a large, narrow, long head shape – but there are many different types of it which could look different.  

Delcey told White Horse News, “It took so many visits to health professionals and pushing from myself to finally get a referral and ultimately diagnosis. As his suture was fused shut, he needed total cranial vault reconstruction to open the suture and make his head a more normal shape.”  

Alex, who is now 18 months old, had the surgery this month and was in hospital for three days. He is now back home and making a full recovery with Delcey, dad Richard and three-year-old brother Richie (also called Richard).  

Delcey said she knew from the minute Alex was born at Bath RUH that there was a problem with his head shape. “Before I had him, I wasn’t aware of the condition,” she said. “The first midwife was concerned about it, but one of the paediatricians said ’no, there’s not a problem.’”   

Back home with Alex, Delcey recognised through googling his head shape that he had craniosynostosis. Over the next 10 weeks she spoke to three midwives, four health visitors and two GPs and was told he would “grow into it”.  

But from her research Delcey knew her son had the condition. “There was a massive difference in the percentile measurements of his head and body,” Delcey said. “His head was in the 98th percentile and his body in the 25th.”    

She learned that if left untreated, craniosynostosis can lead to intracranial pressure (ICP) which can lead to blindness, deafness, and in extreme cases, death.   

After presenting what she had found out to the GP, Delcey was finally referred to a consultant, who recognised the condition as soon as they walked into the room.  

“They X-rayed his head straight away and within two days we had a diagnosis,” Delcey said. Alex had sagittal craniosynostosis which affects the middle suture.   

“Alex has made an amazing recovery,” Delcey said. “He’s a warrior. He knew nothing about the surgery but for us as parents it was horrific to go through. However I would much rather go through that than not having the surgery done and the risk that he could get ICP at any time.”  

Delcey said the worst thing about knowing something was wrong but not getting a diagnosis meant there was no support for what they were going through. Groups and charities for such conditions often require a diagnosis before families can join.  

As soon as they were referred to the John Radcliffe Hospital at Oxford, Delcey and Richard were told that if they had any concerns that Alex had cranial problems or vomiting, they could telephone the nurse at any time.   

“At Bristol we were told it was just a cosmetic procedure – it’s not. You can leave the head as it is but symptoms of ICP can come on suddenly and within two or three hours.  

“Alex will be under review by the team until he’s 13 because they like to make sure the surgery has gone successfully.”  

Delcey has posted about their experience on Facebook group The Family Lowdown which has over one million members, and she received over 13,000 likes. “Fifteen to 20 parents messaged me saying they had concerns about their baby’s head shape. I found out there’s also a little girl in Westbury who has craniosynostosis even though it only affects one in 2,500 3,500 babies.  

“I want people to understand that sometimes medical professionals can be wrong and I want to share his story so that other parents can be aware and know what to look for.”  

Richard, Richie, Alex and Delcey 

Alex after his surgery 

Alex after his surgery 

Alex before his diagnosis 

Alex and Delcey