If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Having difficulties logging in or resetting your password?


Please email [email protected]

Would you choose to have a child with CP or end their life?

laracolaraco Posts: 2Member
edited May 2014 in Parents and carers
Hi there,

I'd like to hear from someone who's a parent of a child with CP. Let me give you some background. My daughter was born at 26 weeks 500gms. She's got problems with her lungs and isn't getting enough oxygen. The doctors have given us a choice either to continue with the treatment which could result in CP or another disability if she survives or to withdraw the treatment. The thing is, if you could prevent your child having CP by ending its life would you? What's it like to be a parent of a child with CP? My girl is underdeveloped for her age. Please advise.

Many thanks,
Larsa

Replies

  • stephgreenstephgreen Posts: 28Member
    Hi there this is such a difficult decision probably the hardest you'll hopefully ever have to face. My son jack is 2 and has dystonic cp, and I have to say I worry myself sick every day. Wonder what his future will be, will he be happy, is he in pain the list goes on. But I wouldn't be without jack. It is hard work cos jack can't physically do anything and gets very frustrated. I worry that when he watches his friends he wishes he could move like them, it makes me feel sick. It's so hard cos your little one is so small you don't know the extent of the damage, they may have it mildly where they can actually use there hands and play. It's just so hard to tell, and sometimes the doctors can be wrong and our children amaze everyone by being so strong and determined. Having a child with a disability does totally change your life, not always for the worse. But it is a life long commitment, it may be they need care for the rest of there lives its just so hard to tell. I do really feel for you and I hope you make the decision that's best for you and your family. Do you have other children? You take care steph x
  • laracolaraco Posts: 2Member
    Hi Steph,
    Thanks for your response. It sounds like a challenge but rewarding too. No, we don't have any other children, this was our first.
    Take care,
    Lara
  • stephgreenstephgreen Posts: 28Member
    Yes it is rewarding but also difficult, but then we have no other children so can't really compare.
  • mollymoobarnesmollymoobarnes Posts: 107Member
    Hi hon

    In our case my son Tom (now almost 3) was diagnosed with 4 limb spastic CP at a year of age so when he was born at 32 weeks we were blissfully unaware that he had a brain injury. He and his twin were in ICBU with a little boy who was born at 24 + 2 weeks who had a brain bleed and other problems who the doctors knew was going to have a lifelong disability. The last we saw of him he was going to Bristol hospital for surgery. A year later, when Tom had been diagnosed with CP and we started attending Conductive Education sessions, we bumped into the little boy and his mum and found that not only had he survived it all but although he had also got Cerebral Palsy he was LESS affected than my son, despite my son having no apparent indicators of a brain injury at birth. The little boy is now larger by far than my son, despite being less than a pound at birth, and is walking completely independently. You just never know how each child is going to be affected.

    If I had known then what we know now - that despite his severe physical disability Tom is a wonderfully happy boy with a desire to have fun and participate in life fully, despite not being able to sit, crawl or walk unaided, I would have made the choice to save him at all costs. That's I guess because know that Tom, despite his physical problems, is cognitively unaffected and so has a good chance of having a good job, family etc, even if he's always going to need lots of assistance with his physical limitations. We have friends with kids with CP who are not so lucky - who do not have speech and have limited understanding of the world around them - they have a harder time in getting their kids engaged in therapy whereas Tom is usually happy to work hard because he can understand why we are doing it. Having said that, even if Tom had no cognitive function at all, I would have chosen to save him at all costs because it would, to me, be better to have him in our lives than to not.

    Its not an easy life being a mum of a child affected by Cerebral Palsy. Tom has a twin sister who is able-bodied and an older sister who is only 5. I am stretched beyond what would normally be seen as sustainable but I manage it because I love my kids and because I have the love and support of family and friends who help look after the girls when Tom and I have therapy or appointments. Its not perhaps how I would have wanted life to be - the panic and worry can be overwhelming and sometimes I just want to say 'sod this' and walk off down the road and leave it behind but in the main I have surprised myself with my ability to cope, to be the mum they need me to be and, most importantly, to have fun with them all.

    No-one can make this decision for you - If only the docs could tell you how likely normal cognitive function might be. All I can tell you is that if you decide to fight at all costs you WILL cope with being a mum of a child with special needs, you will have good times and bad and it won't be easy at all but you will be fine.

    Thinking of you and your little one and wishing you the courage to make the right decision for your family - whichever one that might be.

    Maria xxxx
  • imogen37imogen37 Posts: 61Member Listener
    Hi

    The truth is I don't know what I'd do if I was in your situation. When we found out that my son has CP, I wished he hadn't survived. a year and a bit after the diagnosis I am glad he did.

    My son is at the severe end of the severe CP scale and with NHS treatments would never even hold his head. This is why we went with Advanced Biomechanical Reahbilitation(ABR). It's new for UK, out son was the first patient in UK, but has been used on the continent for 15 years. It's a lot of work, but it gets results where other treatments don't. Now we are at the fortunate position when he is making steady progress and we are watching him getting stronger, straighter and more mobile month after month.

    x
  • redbookredbook Posts: 1Member
    Our son was born at 26 weeks and weighed 900g. When he was born the doctors said that he is likely to have a disabiltiy. When we had the MRI scan, we got the results and they said that he might not be able to walk, talk, communicate, eat...the list goes on. What the doctors should have said is that they don't know. Because they can't always predict what a child with Cerebral Palsy will be able or not be able to do. This will depend on what stage the MRI scan is done at.

    A child will develop, see what happens. Conductive Education is fantastic. If I was in your shoes, may be give the little fighter a good chance to fight, but its a decision that as parents you need to make.

  • IkeysmumIkeysmum Posts: 10Member
    Hi-
    I am mum to twins, Isaac and Jacob, Jacob is unaffected, but Isaac has 'mild' cp. (Right side hemiplegia).
    The twins were born on day one of week 33 after trying to come at week 29,(Isaac's Sac went) and my being hospitalised. Jacob was ventiallated with c pap, Isaac wasn't,, just oxygen, but both were small at 4lbs, and were initially tube fed. isaac did get jaundice too. They spent about 11 weeks in hospital I think on SCBU (Special care) I knew there was something not right with Isaac as his head was always to one side and his neck was stiff, and he reached all his milestones very late, but he did get there with most of them, eventually he could sit up, about six months after his twin, and by two and a half he was walking reliably. He wasnt diagnosed until he was 2. At nearly four he still wasnt toliet trained, even though his twin brother had been at 2.
    However, Isaac is only mildly affected, even though a brain scan confirmed brain damage. He is an extremely happy child, and although he gets frustrated and sometimes his behaviour is challenging, he has a full and active life. His mental ability is unaffected, in fact he is very bright, and sociable.
    I absolutely adore them both.
    However, of course every child is different and only you can make the ultimate decision.
    Thinking of you
Sign in or join us to comment.