Two-year-old Northampton boy has life-changing skull surgery after mum knew something was wrong at birth

Mother-of-two, Amy Morgan, wants to raise awareness of a rare condition her baby boy had to have surgery for after his skull did not develop properly in the womb

By Megan Hillery
Wednesday, 15th December 2021, 9:49 am

A Northampton mum wants to raise awareness of a rare condition that caused her baby son's head not to grow properly in the womb.

Amy Morgan, 37, is the mother of nine-year-old Esmae Brown and two-year-old Eli Morgan. Amy was pregnant with Eli when she was carrying out her regular food shop in July 2019 when she suddenly went into labour.

Her contractions began as she was driving home and she gave birth in her neighbour's house. As soon as Eli was born, Amy noticed something unusual about his appearance.

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Two-year-old Eli before and after skull surgery.

She said: "The first words that came out of my mouth was 'he's got a long head, hasn't he?' I knew something was wrong."

Eli was referred to a pediatrician at the John Radcliffe hospital in Oxford, who diagnosed him with 'sagittal craniosynostosis'.

When a baby is born, their skull is made up of several 'plates' of bone that are not tightly joined together - they are supposed to fuse when the baby grows older and all head growth is complete.

Sagittal craniosynostosis causes a baby's head to fuse before birth, leading to the skull being long from front to back but narrow from side to side. According to Great Ormond Street Hospital, this condition is more common in males than females.

Amy Morgan with Eli, 2, and Esmae, 9.

Amy said: "When I first went to Oxford, doctors said that he won't need an operation but, when we went back a second time, the doctors said that his head had grown a lot and he urgently needs an operation.

"I was in denial for a very long time and that was when it hit me. It was really worrying."

Eli's initial skull operation in October this year was cancelled but he finally had his surgery at the John Radcliffe Hospital on Thursday (December 9).

The surgery took around five hours and Eli subsequently spent two days in hospital and was home by Sunday (December 12).

Eli now has a surgical scar that runs across his entire head.

He now has a scar that runs from the left to the right side of his head.

On Eli's recovery, Amy added: "He is now sitting on the floor playing on the carpet like nothing happened. Eli has been very lucky - he has had no swelling at all.

"Every other day, I am washing his scar and he's living a normal life but doctors told me not to take my eyes off him for bumps and tumbles. He's a boy, he wants to be up and running around and climbing. Me and my daughter, we are always telling him 'be careful.'"

As the date for Eli's surgery approached, Amy nervously searched his condition on Facebook, which helped her to find a community of mums going through the same experience.

One mother in particular - from Barnsley in South Yorkshire - shared with Amy her experiences of her little boy who had the same condition.

Amy said: "We became friends and she showed me pictures. It makes you feel better that you know someone else who's gone through it and that is what made me stronger and ready for it."

The cause of sagittal craniosynostosis is currently unknown. It is suspected that the condition may be hereditary in a small number of families but the gene affected has not yet been identified.

It is also believed that the cause of the condition stems from the position of the baby while in the womb, altering the head shape.

Problems associated with sagittal craniosynostosis are raised intracranial pressure and speech delay. Some children with this condition start to speak later than other children and require help from a speech and language therapist to catch up.

Reflecting on her birth, Amy said: "As soon as he came out, he had a very long head front and back and a ridge at the top of his head. Some people look at their baby and think there's nothing wrong here.

"This is why you should always get it checked out because, if Eli did not have the operation, it would have caused him problems later in life - putting pressure on his brain. He could have got brain damage."

Now, Amy wants to share her story to encourage parents to get their newborn babies' heads checked by doctors if anything feels wrong so the condition can be spotted early and treated quickly.