We have decided to set up this page to try and raise some money to help with costs towards treatment for Noah. At the minute Noahs head is growing too fast, this has meant his skull has been pushed outwards and is already a very funny shape. The soft spot on his head is larger than it should be to accommodate the pressure inside his skull. As bad as that sounds this is currently a good thing as the pressure in his head is normal due to the extra space.

He is being checked and scanned regularly to make sure the growing slows down and everything is OK. Once that's been done we then get the OK for him to wear a helmet that will gently re shape his head so has he gets older it will become a more regular shape. This costs £3000 and the effects of it are greater if started younger. After a certain age it can not be corrected

A little bit of back ground on whats been going on. When Noah was four days old he was admitted to hospital because he he had jaundice. When, he was in A&E it was noted he had a large soft spot and that it bulged so they worried he had an infection. They decided to keep an eye on him and the next day we went home.

Five days later he had diarrhoea and a slight temperature. After phoning 111 they advised we took him back to A&E just to be sure because of his age. 20 minutes later my tiny baby was having a lumbar puncture and IV antibiotics for suspected sepsis. It was the most horrific thing to witness. He was in hospital for 4 days in which time he had to have the cannula put back in because he kept knocking it out. All the checks came back clear.

After that things settled down slightly until we noticed his head had suddenly swollen. At 7 weeks he was rushed back in. This time an ultrasound of his brain found that one of the layers of his brain is thicker then it should be. At the moment they think this is why his soft spot bulges but they aren't sure until they do more checks. They don't currently have an explanation for why his head grew so rapidly. We do know that no matter what the diagnois is he will need help to re shape his head. This should hopefully not only push back the bones that have moved out of place but help close the soft spot on his head.

UPDATE

Just so the page is kept updated. Noah can not get the helmet he needed his head grew far to fast and wouldn't have been able to be made for him. His head still continues to grow but it has curved off slightly. We are now hoping to use his funds for a few things.

A cot for him to have at home which will allow him to sleep better. (this would be a hospital cot so when he vomits which is pretty much every night we can get to him easier)

We are also hoping to use it to send off his genetic test. This has been done at Alder Hey. However there is a 2 year back log because of Covid. If he doesn't get the results for 2 years either, he will have to wait to start steroids for his lungs which he needs because he contracted whooping cough, or he does start them but they affect his growth long term. Only the answers from the genetic test will give us the 100% answer. We have approached Spire to see what they say. They have informed us they can get it done in 6 weeks. Such is the power of the private sector.

If needs be we will hopefully use the funds for this and to help with any expenses accrued due to him being in hospital. We are hoping he will be referred at some stage to the evelina in London that has a unit just for cleidocranial dysplasia

Second update

We are off to London. He is getting a full genetic screen to see what is actually going on. He is still under Alder Hey for his head, bones, lungs and epilepsy but we need to get answers and not wait till he's nearly 4. By that time we may have lost out on time for treatments and physio. Thanks for all your help.