Hi all,

Madison had her follow up CT scan this week and was also admitted to a ward at another hospital because she was a bit drowsy. Turned out to be low level of sugar in her blood. During this stay the doctor let out the hat he had noticed evidence of fresh bleeding in her head from the CT scan.

We havent been able to speak to her own doctor yet, hope to tomorrow, to find out what has happened.  So as you can imagine we are really worried. Not really sleeping and all the other stuff that goes hand in hand with that kind of news.

Has anyone else experienced this with their kids.

Thanks
Thomas

hi,
hugo had grade 4 bleeds, (which is the worst kind of bleed you can get).

just before hugo was discharged from hospital at 6 and a half months old, his specialist came to assess him to discharge him and he said from looking at hugo’s latest scan’s he has substantial brain damage from these bleeds and from looking at his scan, he didnt even expect hugo to make any eye contact at all. but hugo has always been alert and now he is just over 2 years old and he is nearly exactly where he should be for all his developmental goals. his brain bleed hasnt seemed to of effected him at all so far, and fingers crossed it wont in the future either.

it was explained to us that in a new born baby, their brain hasn’t been ‘wired up’ yet so even if some damage has been done, another part of the brain can take over that job, so basically if you do see some damage, it really isnt the end of the world, as the human brain is an amazing thing.

hope that is of some help to you, and feel free to ask any other questions you may have,
kim.

Thanks to you both for replying,

Madison is 18mnths old now. Got a reply from the doctor today and it was quite positive. He is going speak to another doctor just to be sure. I will def be asking about the grades as you said a grade 4?? Madison had 2 bleeds already but we never heard them grading it. They did say we would need to wait to see what damage there was, if any, to her in the future with her development.

Hugo does have a lot of what Madison has with the long gap, tracheomalachi, haemmorages, hydrocephalus, lung disease. He seems to be coming on great with all the updates you put on. Has he started talking? hows his posture? has his hydrocephalus cleared?

Thanks again.
Thomas & Sharon

hugo did have a very visual curve to his spine when he was about 12 months until right up to a couple of months ago. this was becasue of his hydrocephalus, hes head was bigger then ‘normal’ so it was too ‘heavy’ for him to hold up by himself, so he always used to rest his head on his shoulder, which then made him lean to the left and then caused the curve to his spine, but now he is more mobile his spine is pretty much as straight as anything now.
hugh had delayed physical development,he was 18 months old before he could sit up by himself, he was then only 2 months later he decided he would find his feet and was up cruising around all the furniture and skimming the walls, he was then 23 months old when he started to crawl (this is somethin they said he would probably never do,but being hugo he just did it whn he wanted to, and not before). hugo is now nearly 27 months old an is very nearly taking a few steps by himself without holding on and hugos posture is very good.

hugos speech is delayed, he says, mum, dad, nan, dan, and has just learnt to say no and bye.
we do jolly phonics for sound work, which he can say all the sounds of the alphabet now and do the actions, and we have just started sound games and tongue games from the SALT, we also use baby sign, which he is brill at, and have just started symbol sign, which he is a little reluctant to use.

hugo will always have his hydrocephalus, he was lucky and didnt need a shunt. his head circumference has always been above the 99.6th centile and he has follwed his own curve above it on the chart and didnt spike up. his head looks in proportion to his body, even though when he was a baby the drs always said he had a bigger head, but i never thought it looked large anyway.

when we were told that hugh had his brain bleed we were told they came in 4 grades, grade 1 being the least worst one you could have, and grade 4 being the worst. so its worth asking, as she may only have a grade 1 or 2, but enen if she does have a grade 4, hugh’s doesnt seem to have caused him any problems,

you’ll have to keep us updated on how you get on.

It seems their devolopment is along the same lines. We are just so proud of her.  Her twin Kara helps her too. Its as if she knows somethings wrong and picks up her dummy if she drops it etc.

aw thats lovely of kara

Its difficult having the other young children with her.  They all want to help and crowd her.  You have to keep a close eye on them as they have tried to give her sweets before, and she happly accepted! Its weird that there are more parents of twins and 1 has tofs/oa.
Do you have more?

no, hugo is our first, and one and only so far.
we said ourselves too, that we were glad we only had hugo at that stage, because of how much more difficult is would have been with another to care for too.