Cerebral Palsy
Discussion
My ife gave birth to our second beautiful daughter 10 days before christmas, and within seconds it was obvious that something was wrong. Our baby couldn't breathe unaided and was fitting and she was not given that long to live and we were prepared for the worst.
To be sat down and explained that we should not expect her home was an experience i will never forget.
However, the best part of three weeks on she is still fighting and to my eyes is doing everything on her own and behaving like a healthy baby.
It is said that she will have some degree of brain amage but it is difficult to quantify to what extent at the moment. Not too sure what the future holds, only that i now have two fantastic kids and an amazing wife who is coping amazingly well.
My question is this, has anyone any experience of Cerebral Palsy, or a brain damaged child?
Many thanks for any replies and also letting me let off a bit of steam i guess.
To be sat down and explained that we should not expect her home was an experience i will never forget.
However, the best part of three weeks on she is still fighting and to my eyes is doing everything on her own and behaving like a healthy baby.
It is said that she will have some degree of brain amage but it is difficult to quantify to what extent at the moment. Not too sure what the future holds, only that i now have two fantastic kids and an amazing wife who is coping amazingly well.
My question is this, has anyone any experience of Cerebral Palsy, or a brain damaged child?
Many thanks for any replies and also letting me let off a bit of steam i guess.
My youngest brother has cerebral palsy - as you probably know, there are many different forms, my brother can't do walk, talk or control his limbs properly, however, he's always smiling and you can tell he's switched on when he laughs at things like Michael Mcintyres new DVD 
He'll always require care but he's awesome 
He'll always require care but he's awesome 
I have it myself and as others have said there are varying degrees of severeness, mine is quite mild in that my handwriting is not very clear and I spill the top of the occasional pint but then dont we all! It was also touch and go when I was born so your kid may turn out to be alright! i hope so! Another thing to look for is hearing so check that, im completely deaf but even with all that i still lead a independent life with my own house, missus, dog, motocross and surfing and a suituibly pistonheads motor or two! sounds like a little fighter just like i was
if you wanna know more bell me
if you wanna know more bell me
welshsurferdude said:
I have it myself and as others have said there are varying degrees of severeness, mine is quite mild in that my handwriting is not very clear and I spill the top of the occasional pint but then dont we all! It was also touch and go when I was born so your kid may turn out to be alright! i hope so! Another thing to look for is hearing so check that, im completely deaf but even with all that i still lead a independent life with my own house, missus, dog, motocross and surfing and a suituibly pistonheads motor or two! sounds like a little fighter just like i was
if you wanna know more bell me
thankyou, i appreciate that, as i do all the comments if you wanna know more bell me
She is still in hospital, but she is a fighter, as she was written off 2 weeks ago and is now getting stronger every day.
Thanks all.
As has been mentioned, the degree to which a child is affected can vary - I was at school with a child who had cerebral palsy, and aside from some mobility issues, (as in not so fast/steady on her feet as us) could fully participate in class. At the other end of the spectrum, my brother works as a special needs assistant, and worked with a boy who struggled to walk and therefore spent most of his time in a wheelchair. I attended his class christmas concert, and he was very much accepted as part of the class (and aged 14 had the decency to tell my brother I was a "hottie", no, pics will not be posted!).
Whatever disabilities your baby may grow up to have, I can see from your posting, that they will be an appreciated member of the family, the extent of any damage will only become apparent over time. Congratulations
Whatever disabilities your baby may grow up to have, I can see from your posting, that they will be an appreciated member of the family, the extent of any damage will only become apparent over time. Congratulations
It's amazing how many other families you'll meet (or hear of) who face similar problems.
My seven month old daughter has been seriously ill since birth (not CP) and there have been many times we didn't know if she'd make it, but I'm glad to say she's doing really well and can probably lead a fairly normal life - although she'll be in and out of hospital regularly for many years.
I guess you've looked already, but try http://www.scope.org.uk
and join their forum http://www.scope.org.uk/forum/index.shtml
then try not to panic as you read about other people's experiences. What also amazes me is the problems we (both parents & babies/children) can deal with, when they have to.
All the best to you & the family, especially to your daughter...
My seven month old daughter has been seriously ill since birth (not CP) and there have been many times we didn't know if she'd make it, but I'm glad to say she's doing really well and can probably lead a fairly normal life - although she'll be in and out of hospital regularly for many years.
I guess you've looked already, but try http://www.scope.org.uk
and join their forum http://www.scope.org.uk/forum/index.shtml
then try not to panic as you read about other people's experiences. What also amazes me is the problems we (both parents & babies/children) can deal with, when they have to.
All the best to you & the family, especially to your daughter...
first of all congratulations on your new arrival, a new life is always great no matter what.
do you have any kind of a prognosis ? it sounds pretty severe given what you've said, make the most of every minute you have.
last may, after a difficult birth our third child was born with edwards syndrome, it had not been picked up on any of the scans. edwards is a trisomy (chromosomal) condition involving severe mental and physical disability.
they gave her just a couple of days but we were lucky enough to get her home after 10 days and despite constant pain she soldiered on for almost 6 weeks.
it was a very tough period for everyone but the only consolation in hindsight is we were lucky enough to have made a couple of good decisions - 1. getting her home and making her part of the family, 2. putting everything else like work etc fully into the the background and making the most of every minute. there was no major insight or wisdom involved, just instinct. many others are not so fortunate and pay for it later.
i'm afraid that's the only advice i can offer - make the most of what minutes you have, and the very best of luck.
do you have any kind of a prognosis ? it sounds pretty severe given what you've said, make the most of every minute you have.
last may, after a difficult birth our third child was born with edwards syndrome, it had not been picked up on any of the scans. edwards is a trisomy (chromosomal) condition involving severe mental and physical disability.
they gave her just a couple of days but we were lucky enough to get her home after 10 days and despite constant pain she soldiered on for almost 6 weeks.
it was a very tough period for everyone but the only consolation in hindsight is we were lucky enough to have made a couple of good decisions - 1. getting her home and making her part of the family, 2. putting everything else like work etc fully into the the background and making the most of every minute. there was no major insight or wisdom involved, just instinct. many others are not so fortunate and pay for it later.
i'm afraid that's the only advice i can offer - make the most of what minutes you have, and the very best of luck.
aceofspades said:
first of all congratulations on your new arrival, a new life is always great no matter what.
do you have any kind of a prognosis ? it sounds pretty severe given what you've said, make the most of every minute you have.
last may, after a difficult birth our third child was born with edwards syndrome, it had not been picked up on any of the scans. edwards is a trisomy (chromosomal) condition involving severe mental and physical disability.
they gave her just a couple of days but we were lucky enough to get her home after 10 days and despite constant pain she soldiered on for almost 6 weeks.
it was a very tough period for everyone but the only consolation in hindsight is we were lucky enough to have made a couple of good decisions - 1. getting her home and making her part of the family, 2. putting everything else like work etc fully into the the background and making the most of every minute. there was no major insight or wisdom involved, just instinct. many others are not so fortunate and pay for it later.
i'm afraid that's the only advice i can offer - make the most of what minutes you have, and the very best of luck.
Firstly, many congratulations to the OP, it's going to be an adventure, for sure, but no more so than any other baby! do you have any kind of a prognosis ? it sounds pretty severe given what you've said, make the most of every minute you have.
last may, after a difficult birth our third child was born with edwards syndrome, it had not been picked up on any of the scans. edwards is a trisomy (chromosomal) condition involving severe mental and physical disability.
they gave her just a couple of days but we were lucky enough to get her home after 10 days and despite constant pain she soldiered on for almost 6 weeks.
it was a very tough period for everyone but the only consolation in hindsight is we were lucky enough to have made a couple of good decisions - 1. getting her home and making her part of the family, 2. putting everything else like work etc fully into the the background and making the most of every minute. there was no major insight or wisdom involved, just instinct. many others are not so fortunate and pay for it later.
i'm afraid that's the only advice i can offer - make the most of what minutes you have, and the very best of luck.
My little boy Ben would have been five just before christmas. We had a pre-natal diagnosis of Patau syndrome at the 20 week scan. (Trisomy 13. 18 is Edwards, 21 is Downs). Long story short, we decided to give him every chance we could, and he repaid us with the happiest most glorious four minutes of our lives.
The important thing is to look beyond 'names' and 'conditions', and just see a child. All babies are profoundly disabled until they are 6 months old anyway.
Have fun, enjoy every day, and good luck.
Jon
At the moment, your baby is your baby - not a condition, an illness or a statistic - but a little bundle of joy.
Don't worry too much and just enjoy the lovely moments of having a new born. If there are difficulties later on, the hospital will be able to guide you through them - there are so many fantastic doctors, specialists and support workers that someone, somewhere will always have the answer.
Congratulations and good luck - and don't let it prey on your mind too much
Don't worry too much and just enjoy the lovely moments of having a new born. If there are difficulties later on, the hospital will be able to guide you through them - there are so many fantastic doctors, specialists and support workers that someone, somewhere will always have the answer.
Congratulations and good luck - and don't let it prey on your mind too much
The best thing for you to do is to read as much as you can, it can be very shocking to be told there is something wrong with your child and no one can give you exact details.
One of the main things is to continue to support your family and be supported by your wider family, it is a very odd time and your wife or other family members will not want to accept what is happening. My Mrs still refuses to accept what the future holds and her father flately refuses to acknowledge anything at all.
It may be a little early but when it looks like she is coming home I would talk to the hospital and get them to put you in touch with your OH specialist, they will be able to give you advice on adaptations for your home or indeed help with so many things that you wouldn't of thought of.
Again read as much as you can infact you won't be able to stop yourself reading but here's a tip keep what you read to yourself eh. When you have the knowledge you'll find things are either not that bad or you will be prepared for whatever the future holds (thats simple terms but you get what I mean)
Join the charities and support groups, many send out newsletters and sharing on a forum with others who are in the same boat helps loads.
One of the main things is to continue to support your family and be supported by your wider family, it is a very odd time and your wife or other family members will not want to accept what is happening. My Mrs still refuses to accept what the future holds and her father flately refuses to acknowledge anything at all.
It may be a little early but when it looks like she is coming home I would talk to the hospital and get them to put you in touch with your OH specialist, they will be able to give you advice on adaptations for your home or indeed help with so many things that you wouldn't of thought of.
Again read as much as you can infact you won't be able to stop yourself reading but here's a tip keep what you read to yourself eh. When you have the knowledge you'll find things are either not that bad or you will be prepared for whatever the future holds (thats simple terms but you get what I mean)
Join the charities and support groups, many send out newsletters and sharing on a forum with others who are in the same boat helps loads.
I have no experience of disabilities at all. I have 2 healthy children - a 4yo boy and a 6 month girl but I feel profound sadness when I read the stories here however as others have said, a baby is a baby.
I never wanted children but wife did and, because I love her, I agreed we should go with it. I knew I'd immerse myself totally in the child when born but I wasn't prepared for the almost audible CLICK of a switch being turned on in my head when they presented me with my son to hold for the first time. I was a Dad. I couldn't see anything in the room except him. I was a Dad.
And it was the same the second time round.
My wife is in her mid-30s and I'm 40. Before my daughter was born last year we talked about disabilities. I'm grateful we haven't had to deal with it but during those conversations I realised I could love any baby. Such a change from the "I never want kids" me that was only 5 years ago.
Congratulations. I sincerely hope everything works out for you.
I never wanted children but wife did and, because I love her, I agreed we should go with it. I knew I'd immerse myself totally in the child when born but I wasn't prepared for the almost audible CLICK of a switch being turned on in my head when they presented me with my son to hold for the first time. I was a Dad. I couldn't see anything in the room except him. I was a Dad.
And it was the same the second time round.
My wife is in her mid-30s and I'm 40. Before my daughter was born last year we talked about disabilities. I'm grateful we haven't had to deal with it but during those conversations I realised I could love any baby. Such a change from the "I never want kids" me that was only 5 years ago.
Congratulations. I sincerely hope everything works out for you.
Talk though your fears, issues, concerns, worries, dreams, all of it, positive and negative - all the things that matter to both of you. It's no good 'being strong' on the outside if you are falling apart inside so be aware of how you are both reacting and try to be as honest with each other as you can.
There are at least four relationships you have to try and keep aware of at the moment. You, your wife, your family and your relationship as a couple. Each needs attention and looking after, each needs support. It's hard not to focus all your efforts on your child, but you need to keep aware of these other aspects as well.
My best wishes to you all.
There are at least four relationships you have to try and keep aware of at the moment. You, your wife, your family and your relationship as a couple. Each needs attention and looking after, each needs support. It's hard not to focus all your efforts on your child, but you need to keep aware of these other aspects as well.
My best wishes to you all.
Hi mate, a previous GF of mine had CP as a complication from being very premature. She had a long series of leg and pelvis operations over the course of her childhood, and although she didn't achieve much academically due to the constant interruptions/ time in plaster, she was otherwise a great and fun loving girl! Sometimes things can take a little time
Edited by ZAndy on Sunday 4th January 23:51
littlegreenfairy said:
At the moment, your baby is your baby - not a condition, an illness or a statistic - but a little bundle of joy.
Don't worry too much and just enjoy the lovely moments of having a new born.
Congratulations on your new daughter!Don't worry too much and just enjoy the lovely moments of having a new born.
My daughter has Downs, and littlegreenfairy's advice is absolutely spot on - I couldn't put it better.
The brightest girl in my son's class has CP. It may be a while (years, likely) before the extent of any disability can be accurately assessed. Be wary of believing all you read, much of it will never apply to your daughter. We don't tell parents of "normal" children that they have an x% chance of having this ,or y% chance of suffering from that, so it's easy to get bogged down in things that will never be.
Edited by jimmystratos on Monday 5th January 00:03
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