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16 day old son diagnosed with severe CP - bleak prognosis

ja43118 Member Posts: 5
edited June 2014 in Cerebral palsy
My darling son has been diagnosed with severe CP following a brain insult during pregnancy. He suffered some seizures following his birth and was given doses of Phenobarb to control this. He was taken off the PB over a week ago to allow a clearer EEG to be done following an initial one at 4 days old. He has also had an MRI done and following the results we have been told that the Radiographer has never in his career seen such severe damage to the brain. We have been told that the prognosis is very bleak - and have been asked to consider a Do Not Resuscitate order. He is currently showing no signs or symptoms of problems. He has controlled movements, has his eyes open, reacts to sound and although is being tube fed - he manages to suck on his dummy very well. We are told he will deteriorate over the coming weeks but it is very hard to accept that they are right when you are spending time with him and seeing nothing to convince you that they are right. We have no idea how to deal with this, where to turn for advice or whether to accept that they are the professionals who know and we must be guided. I just feel so helpless and want to do everything I can for my baby boy. I am ready for the work that needs to be done, I just dont want him to suffer in anyway - just so that I can hold onto my baby boy. Advice needed.


  • hilsflynn
    hilsflynn Member Posts: 24
    I really feel for you...like so many we too have been there. Only you can decide. We can share our stories to try give you a perspective of what could happen.

    1 thing I have learnt in the 40+ months since my son was born that medical professionals do not like to give false hope, to the extent that they have a tendency to give an over negative prognosis. One honest thing we have always been told is that despite all the knowledge they do have, they know very little about the brain and plasticity (sp?) is an amazing thing.

    My son was given a 50/50 chance of surviving a further 5 days following a massive brain injury at 4 days old (he too had suffered some kind of pre-natal incident, leading to no foetal movement and an emergency C-section). We were told that if he did survive that we would probably take home a child that would never do anything but lie in a cot unable to feed or move. It didn't take long to realise that that prognosis was overly bleak as he was feeding from a bottle within a matter of days. 6 weeks later we took home our beautiful boy. He was probably 6 months old before he started doing anything other than just lying and looking though. I can't tell you the details of the MRI off the top of my head, but I know we were told the damage was such that he was unlikely to develop CP. Less than 6 months later we were given a cautious CP diagnosis.

    He is now over 3 and half, and slowly meeting milestones. I still don't know how many he will hit..but he is a very happy, intelligent, determined and independent boy who attends mainstream school. He is deaf and uses a wheelchair and a walking frame, needs 1:1 assistance (at the moment) but he is getting there with all the self help skills (feeding, dressing, toileting) and I know he will be able to live independently. One in the eye for those doctors.

    I occasionally think back to how I felt when we were given that prognosis and was so glad we were never directly asked about DNR as I have never told my husband how horrified I was at the prognosis we were given...they seemed so definite. But how you feel in a room to one side with a doctor, compared to sat by your child's incubator are worlds apart. My heart goes out to you and I wish you and your son all the luck in the world.

  • ScopeHelpline
    ScopeHelpline Member Posts: 207 Courageous
    Hello ja43118

    We are sorry to hear of the difficulties your son is facing. If you feel that you can contact us we will be happy to offer you information and support, in addition to what you will hopefully receive from other parents on this forum.

    Please call us on freephone 0808 800 3333, or email us - [email protected]

    Kind regards

    Scope Response Helpline Team

  • drbrunel
    drbrunel Member Posts: 16 Connected
    This is a horrible position to be in and I completely know what you are going through

    Out amazing little boy theo was born three months early after a series of errors by the NHS for which we are suing

    Theos intial brain scan showed that he had suffered a stroke to the right front of his brain described as moderate.

    As days progressed and after further scans, it was determined he had grade IV ventricular bleads with PVL on both sides..Hydrocephalus followed..

    At this point we were told pretty much the same as you however...The caveit which was always given is that doctors cant predict what may or may not happen..

    Theo never had physiological symptoms of his brain damage....He was never shunted and his hydrocephalus seemed to resolve after a series of ventricular taps...He has never seemed any different to dare I say it "a normal baby"

    he is now 10 months corrected and the bubbliest baby you will ever meet..Admittedly he has been delayed in reaching his milestones due with the history he has had, that does not surprise me...

    For the last 3 months he has been really close to sitting so we are sure he will get there soon and are confident that crawling and walking will follow thereafter....Cerebral Palsy has been discussed but it is still too early to tell and even if he has it, with the distance he has come hopefully any disability he may have will be minor...

    So what advice can I give knowing that I was in your shoes 10 months ago....For me personally life has been tough. Not only with Theo but my wife has been left with serious complications that make the future look pretty bleak for her...Actually its been worse than tough...A complete nightmare if Im honest with constant worries...Its been the worse year and the best year of my life at the same time. Do your research and go into the future with your eyes open for all outcomes

    I love Theo however, more than anything and would not change anything and have been very happy with the descisions we make..However, one always has to be prepared for what may happen in the future, good and bad but I will never accept a "no" from a doctor again..They do not have all the answers and in many cases simply do not know...

    Keep the faith....A baby is the most amazing thing

    "We must accept finite disappointment, but we must never lose infinite hope
  • joden
    joden Member Posts: 12
    So sorry to hear your going through this with your little boy. You sound exactly the same as me nearly 6 years ago, my little boy had severe lack of oxygen at birth and has got severe cerebral palsy, he fitted about 3 hrs after birth and had lots of drugs to stop these. He had a ng tube put down his nose so i could feed him with my milk, things didnt look good for him either we stayed in special care for nearly a month. And then when we got home i have to say the first 2 years it was just one thing after another with appointments and feeding issues. He also started having noisy breathing which we were told he only had about 2yrs with us. Well Dennis now is such a ray of sunshine, he goes school and has good quality of life and laughs for britain! He is fully dependant on me but i feel so lucky to have him here.
    Take each day as it comes try not to get bogged down by medical jargon etc. It will be hard ad your take steps forward then twenty back sometimes, stay strong and shower him with love.

    josie x
  • Jacks_Mum
    Jacks_Mum Member Posts: 3

    Firstly i would like to say, i know what you are going through... my son was in NICU for the first two months of his life... me and my partner were distraught, we never thought this was going to happen to our baby, jack was admitted to NICU straight after i gave birth, i had the shortest cuddle and to be honest didnt really take it all in due to all the gas and air i'd just had. Firstly they were concerns for his breathing, a few days later it was spotted that he might be having seizures, they had to use the strongest anti convulsant drugs they had, so my baby ended up on a life support machine for around a week, then they weaned him off the strong drugs onto phenobarbe ( which he still is on) then an MRI spotted that he had 'moderate' braindamage, a few days later it was revealed that actually the second MRI suggested that the damage was much more severe... through all of this i was seeing a midwife at the hospital for my post natal checks... this woman used to work in NICU and SCBU she turned round and said, even though they have evidence to say otherwise..you know in your heart whether you babys going to be alrite or not, she said she has seen tuns of children prove the diagnosis wrong and has even been to some of the kids 18th birthday parties (the babys who were diagnosed not to make it past their first birthdays) from then on it made me more positive and eventually Jack got better or well enough to come home and now in my eyes is doing great, he is a totally diffrent child from when he was in hospital, he still has abit to catch up with the other babies his age but he's only six months so there's plenty of time, As there is for your son, plus Jack won't even suck a dummy still, so your son is definatly doing somthing right!!
  • Jacks_Mum
    Jacks_Mum Member Posts: 3
    hi joden, your son had a feeding tube, how long did it take for him to feed, or does he still have one? this is the main issue for my son at the moment.
  • ja43118
    ja43118 Member Posts: 5

    Thank you for your reply. It is so sad to hear of the many people who go through these situations, but even sadder that we can take comfort in sharing our experiences with others and easing the loneliness that goes with this.

    I share your feelings of experiencing the best and worst times of my life, but as we are only 5 weeks into this I can only imagine how difficult this has been so far for you. Your words have given me hope, and I can only pray that we all prove the doctors wrong and make the right decisions for us.

    I often wonder how difficult it is for men to cope (not in a sexist way) but I know that my husband is trying to not only look after me, following my operation but also my son, and feeling like he has to be the strong one and take care of us. We keep talking and sharing our experience and that is helping me stay strong for now. As you say - noone knows what the future holds, good or bad, but I am focussing on the now and trying to enjoy every moment, as I do not want to waste a minute of my beautiful son's life, worrying about the unknown.

    I would be grateful for any information you have received which you feel has been helpful to you, which may also provide us with more info and allow us to be prepared.

    I wish you, your wife and Theo a happy and exciting future and hope we can continue to share our experiences and success with each other.
  • ja43118
    ja43118 Member Posts: 5

    Thanks for your reply. These are the stories that give me hope for the future, and I only hope we can all make steps to the future and prove all the doctors wrong. I appreciate your taking the time to provide support to others and hope we can support each other.

    Love is all I can give him at the moment and he is getting it in bucketfuls.

    We are anticipating problems over the coming weeks/months when we do get him home, but as you say I just feel so lucky to have him in my life now that I am willing to take all that comes just to have him here with us.

    Love to you and Dennis,

    Thanks again,
    Jo x
  • ja43118
    ja43118 Member Posts: 5

    Thank you for your reply, and for mirroring my feelings with your comment "how you feel in a room to one side with a doctor, compared to sat by your childs incubator are worlds apart" - it is so difficult to accept bad news, prognosis, diagnosis when all you see in front of you is your perfect, beautiful child who is showing no signs of any difference from another baby.

    As you say, horrified is exactly how you feel - not to be burdened, not to be disappointed but just to want only the best for your baby and not wanting them to suffer in any way at all. All I can do is give him as much love as possible and hope that everything I do is for his benefit, comfort and happiness and that makes him happy.

    Thanks for your words and support - which along with others postings has given me so much comfort and strength.

    Love to you and your family and continued happiness and progress.

    Jo x
  • ja43118
    ja43118 Member Posts: 5
    Hi Jacksmum,

    Thanks for your reply and support - your story and mine does sound very similiar although I cant begin to imagine how difficult the week on life support must have been but am delighted firstly to hear of his coming home and his progress since getting home. It really does give comfort and hope for the future. As with us, it is still so early and we can only hope and pray for the future development, but I am a great believer in positive thinking and as you say, many of the nurses in the NICU have told stories of the worst prognosis's being proven wrong. I am grateful to the doctors for being honest, and understand their need to prepare us for the worst - but it also gives us opportunities to prove them wrong and they have all said that in their experience - being proven wrong is a great feeling if it means a better life for anyone.

    We are also being asked to consider a stomach tube instead of the NGT, as his sucking and gag reflex is not felt to be strong enough for feeding and am told that the Gastro is a small op which can be removed if/when he is able to start feeding. I am keen to see the reply from Joden on this too.

    I hope we can stay in touch and share our progress together. Jack is a gorgeous little boy!


    Jo x
  • drbrunel
    drbrunel Member Posts: 16 Connected
    I would say that there is not a single source of support that would suit us all....I think we all somehow find our own way of dealing with what was/is happening....

    My friends for example were all too scared to ask me how I was doing in case they upset me or made me angry...As a result, i fell out with a lot of them and didnt really have the support that you would expect friends would give

    Our families were great in terms of support but at times were just too full on but having them around was definately beneficial...

    For me the one thing that has definately helped over the last year is councelling...I go to one session a week with my wife and one on my own for my Post Traumatic stress syndrome...Im slowly getting there...

    The one thing that I now know would have helped when both my wife and baby were in hospital would have been to speak to someone that was going through the same thing and that had gone through the same thing...Lots of people say "I understand what you are going through" but how many really do?? None of my friends or family, thats for sure

    Im happy to speak to either you and/or your husband if there is any advice I can give as we are still very much going through it....

  • renacahill
    renacahill Member Posts: 145
    Hi Jo
    I am so pleased that your little one has defied the odds and made it this far, and if they are suggesting a PEG then even the doctors are looking to the future. You are starting out on a long and rocky road, no one will ever say it is easy, and the shining light that keeps you going is your gorgeous little boy. The Scope board and others offer lots of support and I would suggest taking everything on offer. Talking to people in the same boat is the best thing for staying positive, and if you have supportive family you are already halfway there!

    My lovely little grandson was born 2.5 years ago very traumatically, needing resuscitating, fitted so badly he had to be put back on a ventilator as the normal meds wouldnt work, was unstable and very very ill for his first 2 + weeks. He has damage to the part of the brain (basal ganglia) affecting movement and we are slowly working towards his milestones and he is an absolute joy to be with, bright and happy, surprising us every day, making small improvements which mean all the hard work is paying off.

    Babies brains are 'plastic' and work round damaged areas and often achieve good function. When Elliot was born I spoke to my new next door neighbour and she told us about her son, (4 at the time) who when he was born (same placental abruption as my daughter) was so ill they said the ventilator could be turned off if they wished and to baptise him. His MRI showed damage to his cortex and severe damage to his basal ganglia. It was a long uphill battle as he was extremely low toned (not holding his head up til 9 months) and would still lose balance easily. A second MRI showed this damage much less as other brain cells had taken over and worked round the damaged areas. Now at 6 you would not know anything was wrong with him, he needs help with fine motor skills but is bright and active. At the time of Elliots birth just hearing that a child with worse damage had done so well was like a huge ray of hope in a world consisting of SCBU and the feeling that an iceberg had taken up residence in your chest! Keep strong and I hope things go well for you all.

  • Daisy2010
    Daisy2010 Member Posts: 7
    Hi, Id have to agree with many on here that believe your heart with this. Our daughter Daisy was given a very bleak diagnosis to begin with, she has been diagnosed with Spastic Quad CP, but she is doing extremely well to how we had initially been told. She is a little slow with her milestones but I know in my heart she will get there. We were transferred to and from various hospitals after Daisys birth and the last hospital we were at before Daisy was allowed home really made a difference to her behaviour. The first out of town hospital we had been transferred to did not like anyone touching or handling her so much so we didnt get to cuddle her until nearly two weeks after she was born, but in the last hospital the midwifes and nurses were very much of the opinion that touching, cuddling etc was the best thing for her. After a week Daisy had responded so well we were allowed home, and I still believe that with our encouragement and over loving she will get there. It has helped me to speak with other parents if only to compare to our own story but it does help you realise that things are not always as bad as they seem. Good luck for your future xx


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