craniosynostosis

[3under3mumma]

My 6 month old sold has craniosynostosis, we have been referred to Great Ormond street hospital for surgery.

Reassurance ? Experiences?
Holding baby very close tonight x

I've NC as with other posts on here this so quite identifying.

My DS is 6 and was diagnosed with unicoronal cranio when he was about 3 months. He had the surgery at 18 months to correct it.

There are loads of support groups but they told us the best thing was to not google it too much as you will find upsetting images and wrong information.

It's so scary when you think about what they have to go through. But it's amazing when you think about what they can do during the surgery. He was in surgery for just over 9 hours and we spent 6 days in hospital. His eyes were swollen up and it took about 2 days for him to be able to see properly. When we got home the swelling went down and it was just a case of keeping the stitches clean. He is absolutely fine now. We had check ups every few weeks afterwards and then it went to months then once a year and now we don't have to see them until after he turns 7. They think he might need further surgery as his eye has some issues but they're happy with the shape of his head and don't think anything else needs to be done.

What kind has your little one been diagnosed with? There's a brilliant Facebook group called cranio ribbons parents support which helped me loads.

Honestly we haven't been given full answers yet. We were at St Mary's hospital in Paddington and that's where he's been having all his scans . No health professional noticed so I brought it up at the 8 week check. St Mary's called yesterday and confirmed he will need surgery at GOSH and to prepare to have it by the end of the year .

Which type does your son have? How was the surgery , could you stay during ? Could you sleep at the hospital. Are you in England? Sorry I have so many questions.

Yes I'm in England. He had his surgery at Alder Hey in Liverpool. I was able to stay with him. We had our own room the night before but the night of surgery and the night after we were on the intensive care ward. He was very clingy and wanted to just sleep on me so they ended up bringing a bed in for me to sleep in with him whilst he was hooked up the the machines and on a drip. It was too difficult to get him in and out the cot so often with the wires. In our own room he had a bed and there was a little sofa bed for me to sleep on but again I just slept in the bed with him. DH was able to stay at Ronald McDonald house on the hospital site which was great. We were allowed visitors but we ended up asking family not to come as they would have been upset seeing him in the condition he was in.

The surgery went really well. It was hard seeing him afterwards as the scar is quite big and his eyes were so swollen so prepare yourself for that!

I was the first person to notice anything about his head when he was a couple of weeks old but he was delivered by forceps so everyone I mentioned it to just shrugged it off and said it was normal and would fix itself. It wasn't until he was about 8 weeks and the HV came out and I raised a concern that it was noticed. She agreed straight away that it wasn't right. He had a ridge on the top of his head and one side of his forehead was completely flat. We waited until he was 18 months to get the surgery though so he must have a different type than your DS.

My son had this done > 20 years ago, when he was 1 year old. He had a very odd shaped head but the GP said it would "grow out". When we did see the neurosurgeon he sad he wished he'd seen him earlier, as it needed a bigger operation.
He had lamboid synostosis (fused occipital bone), and as previous poster said, he came back from Theatre with a drain in his head and very swollen. Surgery went well, and he recovered quickly. He would only sleep upright in his pushchair for a while.
Best wishes, it's very scary being a parent ( I was and I was working in clinical healthcare at the time)
The team are experts (they do this surgery in very few centres, to consolidate skills), and will explain everything, if you're not sure about anything, ask them again.

I can give you a reassuring story. My son was missed completely, and was only diagnosed as a 4 year old. The specialists who saw him were fascinated at the shape of his head (completely oval, with a double-depth bone on top, and a distinct long back of the head) and were concerned he might have some sort of brain damage. It was too late to operate so they followed him up for the next ten years.

He was peculiar looking as a child. He was teased about it. But as he grew it sort of normalised and he is now a fantastic young man, very intelligent and very handsome (not just me saying it, he's was top of the class at primary school and has done a lot of modelling as a young adult!).

I'm glad, with hindsight, that his diagnosis was missed and I didn't have to decide about, and go through with, operations and helmets. But then his was symmetrical, the fusion was straight down the middle of his head, so we didn't have to deal with some of the issues other children have to go through.

This is a condition that has been thoroughly researched. Specialists in the area are very used to dealing with the most extreme conditions, and as far as I can see all the children (operated on or not) come out of it pretty well. I second the suggestion of not googling - you come up with two sets of results. The very extreme (which, if your baby had it, would have been diagnosed at birth if not before) and the ultra-worried-over-insured-American sites who want an operation for every child who doesn't have a perfect head.

Neither is helpful!

Hi I know this is an older post, but looking some advice about my 4 month old. Health visitor feels baby’s head is a little strange at the back and soft spot is small. Do you think this could be Craino?

he looks perfect from the front but head does bulge at the back a little.