Feelings upon discovering your child has CP

Sam_Toucan · February 2013

Hi forum, new poster here. We've recently discovered one of our 2 month old twins has substantial damage to his brain, most likely to result in CP. Can't say for sure how serious it will be as he is so young, however we can already notice stiffness in his legs and back, and seemingly uncontrolled spasms.

My question is how do you cope with the emotions of this and does it get any better? Since hearing the news I've lost all joy of life, have no appetite, not sleeping ...etc. It's always on my mind, from first thing in the morning until last thing at night. I don't find satisfaction in anything, even spending time with my children who I love dearly.

Do these feelings go away? Or is this going to be at the front of our minds for a very long time? How do you deal with the news, and get on with making the best of it?

Sam

mollymoobarnes · February 2013

Hey hon

Join the club - I also have twins (boy and a girl), one of whom (my son Tom) has Spastic CP affecting all 4 limbs. I can't tell you that it'll ever be easy and that you'll go 'oh, its fine' - you are bound to have days when you wish with every fibre of your being that you could make things different, but it WILL (I promise) no longer be the sole thing you think about and you will come to not think about it and mourn about it all the time and that happiness will return. I didn't think that we were ever going to get over it - I felt just the same as you when he was diagnosed 2 years ago but I have learned to live with it and most importantly, I love and enjoy every day with the kids, I take huge pride in the progress that he's making and I am having a wonderful time with them all (we have a 5 year old too). It's not the end of the world, just the start of a new one for you all.

Take every bit of help that you can get your hands on, fight his corner, get into a group or therapy where you can spend time with other CP parents, keep talking to your partner and accept that you will both be dealing with this in different ways and don't hold all of this in. Talk to your friends and let them help you through.

I'm here for a chat if you need me.

Maria xxx

Sam_Toucan · March 2013

Thanks for the words of encouragement. Right now we're in a very low place - going through all the "what if" scenarios and thinking what we could have done differently... long story short we had concerns about his treatment in hospital but didn't speak out as loudly as we could have done.

He's such a lovely baby and doesn't deserve this, I think it every time I handle him but hopefully I can push those thoughts away in time.

Sam

stephgreen · March 2013

Hi there my boy has dystonic cp affecting all 4 limbs. You mustn't blame yourselves but I know it's so hard not to. I had a placenta abruption and although there is nothing I could have done to stop it I will always blame my body for the problems that jack has. I think it's so hard as a parent to watch your child struggle. As time goes on the pain does get better. I remember those early days u just can't describe them. I don't think I'll ever be ok with the situation u just learn to deal with it, but I sometimes still can't quite believe what we're going through. I hope your pan gets better soon x

zachking · March 2013

Sam, we have a boy of 19 months. He is yet undiagnosed. he may have CP a touch of autism and is delayed right across a broad spectrum of areas. He most certainly has some brain damage. we also believe this was caused by negligence. Dont get hung up on a 'label' we did and 2012 was a horrible year for us as a couple and a family. Get your child into a regime of physio as soon as possible, there are child physio's out there. This has had a massive impact on our boy Zach. He is now just able to sit unsupported and is almost crawling....I know exactly how you guys are feeling. somewhere I read the realisation of having a 'disabled' child involves a grieving process similar to loosing a child. The realisation that your dreams of a perfect family have been snatched away from you. We know we have been through this. It makes sense. Be strong and honest with each other, be open and fight like crazy for your child. Celebrate every tiny step your child makes in the right direction. Its how we stay positive. Its hard work but eventually you will see progress. small steps.....I hope this helps. you are not alone, it often feels that way.

mollymoobarnes · March 2013

You will go through all of that - it's natural. At first I think you think of little else and then real life creeps in and you think of it less and less. If there is a case for compensation you should go for it - money will help make life more comfortable and you'll be able to get the best help. We don't really know what caused Tom's brain injury - we are led to believe that nothing untoward happened at the birth (emergency c-section due to pre-eclampsia) nor in special care. No periods of hypoxia or difficulty. We think that whatever happened had already happened before he was born - more likely than not it was caused by a car accident I was in a month before their birth. I was uninjured but it was bad enough for the car to be a write-off and there is a court case I have found where a number of kids were born with PVL (periventricular leukomalacia - the type of injury Tom has) and the mothers had all been in accidents at around the same numb er of weeks gestation as me. All the mums had been either uninjured or mildly injured but their children all were born with the same damage in the same area as Toms (the lateral ventricles) leading all of them to develop CP. We'll never know and ultimately I guess it doesn't matter - we couldn't prove it so are unlikely to win any compensation.

Thinking of you all

Maria xxx

Joalex · March 2013

Hi, my son is now 6 and has quad cerebral palsy. I remember being in your position quite well, will he walk talk even smile...,,,of course he will. In reality these questions just disappear and don't really matter,my son is now a very happy comfortable young man, he smiles when he is happy, he can't walk talk, sit but he is able to tell me what he wants ( believe me you will know) and he has 2 younger sisters who know equally well. Of course we go through rough times and there are problems associated with his condition ( he has recently had surgery on his hips) but at the end of the day he is my son and is a complete joy. My advice is to take each day as it comes, remember
That YOU are the expert when it comes to your child's condition and if you do
Think there may be an element of Negligence then pursue this, you will need the extra income to provide care and equipment for your child in the future. Hope this helps x

Toby1 · March 2013

Hi. I just wanted to say I know what you are going through. I have an 11 week old son. He suffered a birth injury which resulted in oxygen deprivation, brain swelling and seizures when he was 2 days old.

He was fed through an NG tube because he did not develop a gag reflex and had a weak suck. We too think it was neglegence. I was 41 weeks and 2 days when I went into labour. I had a low risk pregnancy and what I think was a normal 12 hour labour. However he was stuck for 2 1/2 hours, back to back and it appears the signs of mecunium and distress had been missed. By the time his heart rate dropped it was too late and he was born with an apgar of 1 as he was pale, floppy and not breathing.

I am torn with emotions. I'm angry that I carried a healthy child and put my trust in the midwife. I'm worried every second of the day.

My child had an MRI at 10 days old and it showed brain damage. He has high tone in all 4 limbs and has just been diagnosed 2 days ago with 4 limb cerebral palsy.

But I have to have hope. Tobys gag reflex developed at 18 days old after we were told it was likely he would be tube fed the rest of his life. He now feeds orally from a bottle like any other baby. He smiled on time at 6 weeks. He smiles socially, he is very alert, he follows objects, he bats at toys and kicks his legs. He is almost giggling, coos and ahhs, he can now roll from front to back during tummy time and has great head control. His hips are normal and he can lift his head and shoulders off the mattress when lying down. He has also started grabbing his toys, however he uses his left hand more easily and his movements are quite rigid with his index fingers curled in.

I do not know how he will develop but please have hope as I do. With early physiotherapy a child can grow to do well even if he does not meet all his milestones on time. Every child is different including those with cerebral palsy so they just need alot of love and care.

Toby may have increased tone and may not be using his hands as freely as other babies but he is still able to reach his arms out to grab things and he is only 11 weeks old!

I have good days and bad days. I cry most days as it has just recently happened. I feel lost, bitter, angry and heartbroken but then I look at my beautiful son and know everything is going to be ok.

This did not happen to me it happened to him and I will spend the rest of my life making sure my son is happy. I don't know why it happened but better he was born into a family like mine rather than a family that wont help him reach his full potential. I have a very loving, caring, close, happy family and a wonderful husband and I will make sure my child will feel every bit of that love.

Please keep in touch and let me know how your little one gets on. I will save some of my hope and faith for your little one too.

Tracey
p.s sorry long winded!

Chris75_ · November 10

I found this thread very moving, and i feel i have learned something from the experience

Chris75_ · November 10

I hoped this old thread would draw comment, so excuse me for bumping it up.

Santosha12 · November 10

"I don't know why it happened but better he was born into a family like mine rather than a family that won't help him reach his full potential" (Toby1 above). That sentence alone just completely epitomises pure love.

I hope all of these parents and children have gone on to live fulfilling lives and that their lives are enriched with love.

I was going to post separately under 'A & E Waiting Times' thread about maternity care but it may be as well to post it here. The said post about A & E (sorry I can't recall who posted that) relates to a hospital which shows the CQC Report as 'Good', from it's last Inspection reported on in 2020. You have to dig quite deep to find the reality for other Services provided by that particular Trust. They certainly don't highlight it but they are not, from my personal and professional experience, known for their candour and transparency; I can't speak for other Trusts.

Their Maternity Services were reported by the CQC in 2023 as 'Requiring Improvement' in the domains of Safety and being Well Led. I was unable to find evidence of the required improvements having been made although of course they may have been.

There have been major changes in the way the CQC inspect and report since c 2021 and I believe the changes are still being rolled out/implemented.

Maternity services are dire in many parts of the country and, whilst it takes some digging, the inspection reports can usually be found and may help the people planning to use the service, specifically in planning and managing their SAFE care.

One caveat probably worth mentioning. I receive very good care from a major city University Teaching Hospital - their CQC Report is however, not great 'Requiring Improvement' but looking into it with a fine tooth comb clearly some areas within the Trust do provide exceptional care as would hopefully be the case in many others.

Feelings upon discovering your child has CP

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