My name is Kerri and my husband is Dan. We have two beautiful boys – Harrison who is four and Theo who is eleven months. At just 8 weeks old Theo was rushed to Bristol Childrens’ Hospital with suspected meningitis. We were kept in for five days so Theo could have IV antibiotics. His blood tests showed signs of infection in his body but they didn’t know where.
On day 3 the paediatrician came to see how he was progressing and it was then she noticed a ridge on his forehead and said he had possible Craniosynostosis and would need to go for a CT scan. We were sent just a few hours later for the scan which confirmed he had Metopic Craniosynostosis and would need to be referred to a neurosurgeon to discuss surgery. We were discharged from hospital as an inpatient two days later.
We were referred to the neurosurgeon at the Bristol Childrens’ Hospital a few weeks later but after attending our first appointment with them we came away feeling unsure. We were told they would operate before he was 9 months old so we could get it over and done with. This then made us look for help. After days of researching all about craniosynostosis we came across the Headlines Charity and found a number for Gil Ruff who we called straight away. After lots of useful information from Gil about the 4 supra centres we were pointed in the right direction. I joined the Headlines Facebook group where I shared Theo’s story with all the other people in the group. The response we had was overwhelming. It confirmed to us about the 4 centres in England that specialise in craniosynostosis and this was the first time we had heard about them. The one that stood out to us most was the John Radcliffe in Oxford, they were so highly thought of. We called the JR where we spoke to a lovely lady who advised us to contact our GP to get a referral for a second opinion with the cranio team at Oxford. It was only five weeks later that we had our first appointment with Mr Johnson and his team. The outcome was that we would need surgery sometime between 12 and 18 months as that is when they get the best results. The team at the JR were fantastic and we came away feeling reassured and satisfied. We cannot speak more highly of them.
Theo was seen again by Mr Johnson three months later to see how he was progressing. Again the treatment we received from the staff was outstanding. The outcome of this second appointment was that we would watch and wait as there was no sign of increased pressure on his brain. This is where we are now and have our next appointment in May. I don’t need to feel anxious as I know he is in safe hands at Oxford.
We are so overwhelmed by the support and advice we have received from Headlines. We just didn’t know how to show our appreciation. It was then my Dad told me he was going to do the Great Weston Bike Ride raising funds by sponsorship in aid of Headlines. Myself and my Mum Ger sat down one evening and discussed what we could do to raise funds and awareness. We decided to hold a coffee and cake day at my house where we would sell cakes that we had made. Then we decided we needed a bit more going on and not just cakes so we ordered some craft bits from Ebay and made some plaques to sell. We also filled mugs with hot chocolate and marshmallows and wrapped them in cellophane to sell.
We made our own games to play, guess the name of the Teddy, number of sweets in a jar, guess the favourite cupcake topping. We had a lot of support from our family and friends who also made cakes to sell. Many friends donated items so that we could do a raffle. The day was a great success and we raised a fantastic £510!
I hope the money raised can help promote more awareness for craniosynostosis and keep Headlines supporting families, just like they have with us.