Surgery for craniosynostosis

Mum Janet and Dad Allan tell us about their daughter Ella-Rose who has been treated at Great Ormond Street Hospital (GOSH) for craniosynostosis.

Early days

Janet explains: “It wasn’t me who first noticed something was wrong. When Ella was born, on the second day when they take the baby away to check everything is normal, they noticed that something was wrong with her. They rushed her to have a brain scan. Her frontal lobe was quite soft and literally on her forehead.” 

Allan adds: “It took a while for me to actually realise because I kept on thinking she simply had long forehead like myself.” 

Janet says: “The next day they said she didn’t have fluid on her brain, so everything seems to be fine so she was able to go home as normal. But they referred us to genetics at our local hospital. They did a full body skeletal MRI. Then we waited several months to find out what was wrong with her. Initially they thought that she might have dysmorphic genetic syndrome but then that wasn’t the case. After the results came back they said that she was born with a condition called multi-sutural craniosynostosis. That means that she had mild deformity to her face but also her brain was being squashed together so she didn’t have enough room for her brain to grow.”

Problems for her development

Ella-Rose before surgery
Janet explains: “Initially they said to me she may never be able to talk, feed herself, walk or have a normal life just like a normal baby. That was quite worrying considering she was my brand new baby girl and to me she looked fine, she looked normal, although her head was a bit wonky, but to me she looked fine. Just the thought of her not being able to talk to me or walk and her brain not being able to function, it was worrying. So I wanted to find out exactly what was wrong with her.” 

Allan says: “Like any other parent, this diagnosis was the last thing you ever want to hear from the doctors, we had all these questions like ‘Why us?’, and we worried about how serious her condition was and what kind of operations she would have to go through.”

Referral to GOSH

Janet goes on to say: “When Ella was seven months old, we were referred here to GOSH because our local hospital couldn’t treat her. So we were referred to a specialist here. We first saw Mr Britto. They told us what she had, it wasn’t dysmorphic genetic syndrome, it was craniosynostosis and I’d never heard of it. I’ve never even seen any child like that. When we first came here we were reassured that Ella wasn’t severely affected and she had a good chance after surgeries that she would lead a relatively normal life.” 

Allan remembers: “After our first meeting with consultant I felt much better about her prospects and it made me feel much calmer and understanding of her condition. We had been reading a lot off the internet which seemed to show more severe conditions of this kind. Coming to GOSH was the most calming experience with the fact that we were taking her to one of the best children’s hospitals in the entire world.”

Surgery at one year old

Ella-Rose after surgery
Janet explains: “She was one when she first had the surgery. The neurosurgeon placed springs in her skull to make room so her brain wasn’t compromised. After she had her first operation she learned to walk here, so she walked in the hospital, which was a really big step for all of us.

“She was in hospital for three weeks and then we went home. Then she had a major infection following the first operation. She had three more surgeries because she had quite a lot of pus on her brain and that could have undone everything they’ve done here. But those were the risks of her having the surgery. That was looked after really well here, we stayed here for three months and then we went home. But it was a lot of stress on us as a family because I have another little boy at home who is older than Ella, he is five now.”

Difficult times for the family

Janet says: “At the time my son was still a baby and he didn’t understand why I had to be at the hospital all the time with Ella. He wanted to come and stay here, he said that I didn’t love him. It was heart-breaking for me, to have to explain to my two and a half year old why I can’t be at home with him and why I have to be in hospital with his sister. It was so much stress, I had anxiety problems and depression, but GOSH really helped us a lot. The care here is second to none, the way they looked after us, I saw a therapist for Ella and for my own mental health and she was really good.”

Big improvements after surgery

Janet explains: “It took a long time for her to get an appointment for surgery but as soon as she had the appointment everything went according to plan. She’s talking now, she’s feeding herself, she’s walking - she just has to have regular check-ups every four months to check the pressure on her brain. If she has intracranial pressure she’ll have to have another surgery to stop that. She sees quite a lot of specialists, she sees audiology, she sees ENT and she sees speech and language, and the craniofacial team.”

Looking forward

Janet continues: “Ella is two and seven months now, she’ll be three in October. We’re looking forward to that. She wants a princess dress, princess crown and princess shoes! We’ve just seen craniofacial today and everything is really good; they are planning to see us again in the next year.

“Ella is lively and full of energy, she likes to sing and dance. She is very caring and loving and now aware of her situation and responds positively to going to hospital for her appointments.”

The consultants really care

Janet’s advice for other parents is: “If you are a parent coming to GOSH with your child, I would say listen to your consultant because they know what they are doing and they do care. This is one hospital where I can guarantee that they show you they care; they know what you are going through.

“Everyone’s different with how they deal with their problems, but for me I asked for quite a lot of help and it was given to me. And because I’ve never heard of this illness that Ella’s got, it was shocking. To hear the impact it was going to have on her life it was too much of a shock because she looked normal. The operation saved her life and they’ve remodelled her face now and so she looks as normal as any two year old and her scars have healed so nicely you wouldn’t know unless I told you.” 

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