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How to help my sister when her baby has just been diagnosed with cerebral palsy

kayli1

Hello all. I need some help, advice, anything. My sister had an emergency caesarean last week and my little nephew was delivered and has been in intensive care ever since. He was oxygen deprived in the womb and within the past few hours, the results of his MRI scan shows damage to the central part of his brain, indicating cerebral palsy.

Whilst our family will be rallying around however much we can. This is all such a shock and heartbreaking to see my sister in so much pain and anguish.

Is there anyone who can offer some kind advice? Recommend any support groups? Particularly in Edinburgh?

Thank you,

Kay

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InformationSupportWorker

Hello Kay

I am so sorry to hear about the difficult and heart breaking time your family and little nephew have gone through this past week you must all be feeling shattered.

I am an Information and Advice Worker at Scope and I work with families with a child with a disability or additional need In London around the time of diagnosis, especially cerebral palsy.

Scope does not cover Scotland but if you would like an initial chat my email is vicky.keeping@scope.org.uk. Or you could contact Capability Scotland on 0131 313 5510 this Helpline is open from 9am-1pm.

Does anyone else know of kind advice and support groups in the Edinburgh area.

Thinking of you all

Vicky

htlcy

I don't know of any more support in the Edinburgh area but thought I'd chime in. I actually have cerebral palsy myself and my parents went through a similar situation. Fortunately now there's a lot of support groups through social media which may be helpful. i have hemiplegia, a form of cerebral palsy, and there is a hemihelp support group where parents of those with hemi and people with hemi themselves connect and chat. It might be useful looking around on facebook for groups like this. I imagine it's a hugely difficult time but it helps to know you're not alone. I dread to think what my parents felt like when i was born and told I may have cerebral palsy, but I'm hoping you all get some really helpful support during this difficult time. We're always here as well, and we're all more than happy to help!
Take care,
Heather

JadeB

Hi I also have cerebral palsy. I was born at 29 weeks and had two brain hemorages. I understand that your family will all be worried, but I'd just like To reassure u, I have worked with many children and young adults that all have Cp, and I can honestly say all of Then no matter what level the condition, are all happy confident, and lovely people that all live life to the full. They are a pleasure to care for. I wish you and your family all the best x

kayli1

@InformationSupportWorker, @htlcy, @JadeB - Hello ladies, first just want to say a big thank you for taking the time to respond.

Vicky, thank you for sharing your email and an offer of an initial chat. I will definitely pass that on to my sister and brother-in-law. I think as a sister and aunt, there's a lot I need to learn and understand as well to help them in the best way and most appropriate way that works for them. I think this website is fantastic with helpful videos and information to help educate family members. Will have a look through them and may reach out to you for some advice. Thank you sincerely for your offer of a chat. xxx

To Heather and Jade, I shared your kind words with my family over a quiet moment in the kitchen and it was very warmly received so massive thank you for that. It's so unbelievably positive and heart warming to come across a kind and helpful community of folks such as yourselves.

I know my sis was heartbroken when the MRI results came because of the thought of the kind of life her baby boy might not have because of CP.... it's so great to hear that the children and young adults you work with Jade are happy and fulfilled people! and Heather I will absolutely research those Facebook groups, that's a fab tip! Thanks so much for sharing your stories xxx

tisszy

I had three children in a year, the youngest having multiple and complex disabilities including cp and epilepsy. Right from the start we emphasised that rather than being DISabled he has difficulties he needs to work around.

The frustration levels can rise a lot as he wants to do things. Don't wait on him hand and foot or wrap him in cotton wool but allow him to find his own way and be there to support him. Don't tell him he can't, say Let's try.

BUT he will need strong boundaries so that he's not allowed to play on his disability, because the world will regard him as a lesser mortal, albeit unjustly. A loving but firm hand is the best thing you can do for him.

I look back at all my mistakes, and I made all of the above, which is why I'm sharing this. He may well need a special school, it's not a stigma but something that meets his needs. Now my 32 year old is finally doing what he loves at college after qualifying for other things and he is doing so well.

Be proud of your son no matter what others think. It's not all doom and gloom ... just different. Bless you all.

mary33

Dear Kay, your sister has had a baby boy ,do not lose sight of this, he may have problems, but he is a human being with his own personality and needs whom I am sure you will all grow to love. As a family you can offer practical help but most importantly treat him as you would any other member of the family, do not walk away because you do not know what to say, and help your sister to celebrate the positive side, believe me she will need this!

Family_Services

My daughter has CP. Your sister will find this is just a bump in the road. Be positive! Keep your sense of humour. My daughter says her CP is like like being a member of the royal family, she was born into it.

Zeezee

Hi Kay
I am so sorry about your families recent news. My daughter is 2yr 4mth now and I too was devastated when I realised she had CP. It took a lot longer for the Dr's to agree it wasn't just because she was prem and do a MRI then diagnose her with PVL and Quadriplegic CP, and I mourned the loss of the life she won't have, you imagine all the things your baby will do in their lives when you are pregnant and dance classes, inpromptu pop concerts, ballets shows are just a few for me with having a little girl. Your sister will need time to mourn her loss and at the moment it sounds like you are there for her emotionally and what you are doing getting in touch with people in the disabled community and passing the information on to her will be a fantastic help. There is so much help and advice out there, for her and the rest of your family, your sister is no doubt busy with her son right now, so trawling the internet is not top of her list of priorities, so having someone find the info for her will be invaluable.
The thing that shone through so strongly as my daughter grew and developed was that she has such a wonderfully strong, bubbly, albeit stubborn personality and even the stubborn streak will stand her in good stead with the problems she will have to overcome in her life. I have met lots of children with special needs and they all seem to have this larger than life, look at me, strength and personalities, you just can't help but love them.
Your nephew may not reach all of his milestones or not as quickly as other children, but like Ziyal, when she rolled over for the first time on Fri 13th Nov 15, age 20 mth, I was so happy I burst into tears at her physio session, I called my mum at work and made her cry and I cried all day I just couldn't stop the tears, so I gave up trying and went about my day shopping etc. as usual and I told anyone who had the misfortune of crossing my path all day that my daughter had just rolled over for the first time lol. I didn't even explain the significance to most people and didn't care that they thought I was some crazy woman, I was just so happy. When she sat up unaided for 30 seconds age 2yr 2mth the same thing, TEARS TEARS and more TEARS. If Ziyal had reached these milestones at the same time as other kids it wouldn't have been such a big deal. So what I am trying to highlight is that, yes your nephew will have struggles, your sister will have massive heartwrenching downs, but OMG the highs are the most wonderful, heartbursting, amazing highs you can ever imagine. The feeling of pride at the simplest acheivements are beautiful, and as a family, this amazing little boy you now have the honour of having as part of your family will bring you all together in a way no "normal" child ever could.
I hope that once the shock has worn off you all get the chance to cherise your wonderfully special little boy and remember he chose your family because he knew that you are strong enough to cope with and love him and all his additional needs.

Take care
Zeezee

Katie_G

Hi Kay,

I have just came across you're post and i felt emotional all over again. My little boy had a tough birth he has delayed development, 2 cysts on his brain and at the moment under investigation for cerebral palsy. He cant sit, he cant crawl, walk etc. He turns 2 on 23rd August. This all began for me when he was 6months old and he was just floppy.

(My thoughts and feelings are similar to ZeeZees post)

I would just like to say the best support in the early stages i found was family my partner, mom, dad, brothers. I went into depression and felt so alone and felt like i was a bad mom thinking i had done something wrong and its all my fault. I was so wrong and you will need to tell your sister its not her fault and there is a positive side. Babies are pretty strong and determined. When seeing the paediatrician, speach and language, Siss, occy health and most of all physio provide you all with their help getting stuck into it takes time but hand on heart my sons cognitive development has improved anything he does we always cheer as a family and he laughs.

What i just want to say is the beginning is always so hard and i cried every single day last year (no joke) i cried and got it all out my system until i knew i had to do my best for my son. As a mom your sister will find strength. I have no local support groups. I didnt have a befriender. None of these services are available locally to me which did upset me but i carried on searching plus I had my family and they stood by me until i felt confident to reach out and speak to others. Speaking about it to moms or dads that understand will be the best form of therapy in my eyes.

Please let her know there are people out their who would be more than happy to be a friend but i think family is so important as its just the beginning.

I wish you all the best.
Many thanks
Katie

Abi

Hi Kay,

Welcome to this community. I have also just recently joined this forum and feel encouraged by the warmth I have experienced here. I am deeply sorry to hear about your nephew.

As someone who works with families of children who suffer from brain injury I could not help but be moved by your post. I work as part of a team who endeavour to secure funding for children who have a brain injury that may have been avoided with different treatment, and caused by situations such as oxygen deprivation at birth like your nephew. This may be something your sister chooses to explore when the time is right for her.

The families we work with are in England and Wales but there will be other lawyers closer to home who will support you in the same way. The process may feel a bit daunting but if you are successful, you may secure funding for your nephew that will help to support him for the rest of his life which will give your family some peace of mind for the future. In England and Wales you would be entitled to Legal Aid so it would be unlikely to cost you anything. I am not sure of the situation in Scotland but your lawyer would advise you.

All the best,

Abi