Baby with disabilities after birth - Page 4 — Scope | Disability forum
Please read our updated community house rules and community guidelines.

Baby with disabilities after birth

124

Comments

  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Cannot stress how important it is to obtain a SUI report following a problem before/during & after birth where you have a gut feeling something went wrong and/or you feel that questions you have asked are not being addressed - why has my baby been diagnosed with CP what went wrong?

    (I have just received my SUI report and I am shocked/devistated at the catalogue of errors made by various departments/health care professionals and staff - The SUI report has timed events of what whent wrong and all I can do now is pass this onto the professionals)

    Please follow the below link and summary - I'm not saying it's for everyone, but the report will draw a line around a lot of unanswered question surrounding you/baby(s) care whilst "in the care" of the Hospital.

    http://www.london.nhs.uk/webfiles/Corporate/Serious incidents/NHSL Serious Incident Policy November 2010.pdf

    Serious incidents in healthcare are uncommon but when they occur the National Health Service
    (NHS) has a responsibility to ensure there are systematic measures in place for safeguarding
    people, property, NHS resources and reputation. This includes responsibility to learn from these
    incidents to minimise the risk of them happening again1.NHS London
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    SUI report has been passed on to my medical negligence solicitor and will have their report/finding in the New year.

    My baby's fits have started to get worse again where both arms flinch in time, and noticed the eyes as well. Was initially told to up the medication, however now they are saying they will "change" *** medication. I am apprehensive as the professionals are saying that the medication they want to put my baby on has greater side effects (kidney stones, drowsy) and that it should be administered at night time - Staying positive in that I want my baby staying home for Christmas not back in hospital.

    My baby had physio on Monday and as mentioned (with a struggle) will continue weekly sessions until further notice (once every 15 days was NOT acceptable at this time)

    Whishing everyone a Merry Christmas & Happy New year xx
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    ((Very disturbing to read)) SUI solicitors findings - I have been contact by my medical negligence solicitor and they have described the Hospitals SUI report as a
  • renacahill
    renacahill Community member Posts: 145 Courageous
    Mrsfox. I hope you can have a quiet and happy time this Christmas with your baby and family. Everyone who has read your harrowing story will wish you well. You are absolutely right to fight for everything you can for your baby and so this does not happen to any other mother and baby. It is hard enough to have a disabled child but to know it could have been prevented must be devastating. You are right to take a break and I hope you can find some peace over the coming months with things settling down for you. The past 8 months or so would break many people, so I hope you stay as strong as you have been so far.

    Best wishes
    Kate
    xxx
  • mrsfox
    mrsfox Community member Posts: 76 Listener

    Dear Kate,

    Thank you for you kind words - Christmas and New year was a very great time for all the family sprinkled with some very sad times.

    My baby is now taking nine medications a day and the last change has not made any difference. Still flinches both, legs and eyes in sequence and for appox 2 to 5 seconds and up to appox 10 to 15 times in 24hrs. Contacted the consultant and again told that the new drug can be increased however needs to increase over a short period of time. All sounds too familiar and again not happy but have to follow what the professional are telling me. My baby has been on the new medication for a while now and I confident it is not working.

    My baby continues to have weekly physio, sensory and now I am taking *** to hydrotherapy classes.

    The solicitors are instructing very skilled professionals to investigate and report on the birth which will take months to compile. In the near future they will travel to me and take statements from all the people/family members that was part of the birth (before and up to the day itself)

    Whilst all the documents that I could obtain from the hospital it was the NHS SUI report that detailed the key facts required for the solicitor to base his foundations for negligence.

    There are three key reasons for pursuing the claim for me personally.

    1) To find out what caused my baby to be starved of oxygen (Now confirmed my baby was normal prior to birth)
    2) To give my baby the best financial care available now and for the rest of her life (via court fund management application - long battle ahead)
    3) To stop any other mum having to go through what I have (to identify what went wrong and provided whatever is required to stop it happening again)

    Regards
  • renacahill
    renacahill Community member Posts: 145 Courageous
    Hello. If you think your baby is still fitting ask them to admit him to get them under control. They can tell if they are fits by doing another EEG and looking at the brain activity. I don't know much about fits but I can't understand why they are not making more effort to control them under supervision in hospital!

    How is your little one doing now? I am glad he is getting more services. We found hydro very helpful. Does he manage to feed OK and is he putting on weight? My little grandson is going to have a gastrostomy soon because he lost weight when he started nursery - full of bugs, colds, vomiting you name it! We are upset with this but accept he needs more calories than he can take in orally, he just doesnt seem to like food much, apart from chocolate. Its unlikely to be permanent, but its at a point now where his gangly skinny little legs look too thin to hold him up. We hope it will be a positive move in the long run but again hospitals!!! aarrrgggghhhh.

    Kate xx
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Hi Kate

    Manages to feed OK'ish however I'm told this may change (could get a lot better and/or worse) but like your grandson finds it hard to put on weight, I would say just below what they call average. Liking chocolate get my thumbs up!

    Regards

    Hospital appointment this Friday for my baby to see the eye specialist.

    Last night's "One born every minute" was very sad for me as it brought back some very sad memories (Why watch it? OK yes but has some very nice moments too)

    At least for that couple the Midwife inserted the tube to clear the airway, mine just waited for the crash team to enter.

    In the Hospital notes it was documented by the Dr of the crash team that he noticed that that particular required piece of equipment was still in it's wrapper on arrival!
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    My baby continues to fit and has now become more aggressive again!! appox 10 times a day and displays a firm flinch in *** right arm and into the hand, left arm not as bad, and both eyes blink in a rhythm tic way. The doctor has said that the medication *** is on has four stages and initially was on stage one, now the medication has been upgraded yet again and on stage three.

    Have taken my baby to Physio, swimming, Sensory classes, Hydro theorpy and soon to brain stream (cost about
  • fox111
    fox111 Community member Posts: 6 Listener
    mrs fox

    i hope you are well every time i read a new comment my heart beats so fast.

    i cannot start to imagine what you are/have been going through and i just wanted you to know we are rooting for you and stay strong. The nhs has let you and your baby down dont give up x
  • johnsteve108
    johnsteve108 Community member Posts: 1 Listener
    Thanks for the information
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Hello Everyone
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    19th of March my baby attends *** 4th EEG and on the same day my legal team are traveling down to me for a three hour meeting.

    More tests are required as there is further concern with regards to my babys feeding. Still not putting on much weight and told the worst case would be a feeding tube.

    Have asked all the NHS medical team since birth "How long was my baby starved of Oxygen?" and still to this day no one has provided me with the answer. My legal team has told me that the MRI scan and other key factors would show/provide this answer. I'm angry and there are still many unanswered questions that the NHS are not telling me and or do not want me to know - I'm so glad I have a legal team as (not for all) I want to fully understand why my normal baby was born with Quad CP.
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    It is natural to want to avoid conflict or accusation and to celebrate life rather than focus on its negatives. So why bring a claim? The reality is that State provision to meet the special needs that people with cerebral palsy or brain injury have is insuffi cient in the UK for those needs to be met properly.

    This is where a cerebral palsy claim can provide a lifeline and genuine financial security for life both for the child and the supporting family or carer. Bringing a compensation claim can help individuals to enjoy life to the fullest extent possible.

    Cerebral palsy claims that succeed typically arise as a result of mistakes made during the pregnancy and birth process. Children who are distressed at birth and who were perfectly healthy whilst in
    the womb can suffer a birth injury and acquire permanent brain injury from the birth process itself. However, cerebral palsy can also be caused as a result of errors when the child is very young
    such as in a special care baby unit or a failure to treat congenital disorders, infection, jaundice or meningitis.

    If it is likely that the brain injury originates from medical negligence then the compensation that the child will be entitled to will be very substantial. Cerebral palsy can be very serious and is a
    permanent disability. The law requires those responsible to provide sufficient funds to cover the individual
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Yesterday my baby was fitted with supports that fit on both *** hands and strap around the forearms. Designed so to keep the fingers stretched out and the thumb from trying to be clasped by a clench fist. Nothing will ever be nice, but they are colourful and todate to wear mainly at night and periods during the day.

    EEG takes place on the 19th March.

    Waiting to learn how they medical professionals what to deal with how my baby eats/swallows.

    Still continues to fit. (continue the medication)

    19th March Legal team visiting me at my home address.

  • mrsfox
    mrsfox Community member Posts: 76 Listener
    On the **27/09/2011 I made an entry as on that day I discussed with St Thomas hospital the fact that I thought my baby was displaying Spasm type seizures/fits and I was re-assured that they were not. I remember challenging the Neurologists and again said to me my baby is displaying spasm seizures/fits. Again No.

    **27/09/2011 - Have been told that my baby's fits are fits and not spasm's but they will be booking in another EEG (urgent) to get another reading. This was great news as spasm's are a lot harder to manage, and I am so worried about "West Syndrome" now it turns out that they could turn in to spasm's but at this stage they are not.

    From the 27/09/2011 I have on many visits mentioned my baby
  • Lioness
    Lioness Community member Posts: 10 Listener
    Hi Mrs Fox..... I dont know if I can help answer any of what your going through.... I have a daughter whos ten in May.... we were told she wouldnt even make birth, so, she really is a miracle!! Her diagnosis while I was pregnant was severe hydrocephalus that had resulted in a skull deformity and brain damage. When I was 24 weeks pregnant a leading specialist told me if she survived, she would be 'a vegetable'..... When she was born within one day she had another problem diagnosed, as she grew it was another and another.... she was born flat and it took eight minutes to rescusitate her. For the first nine weeks of her life she was so ill at one point I signed DNR forms. She wasnt expected to do anything. I took her home at ten weeks and I loved her and stimulated her and researched constantly. When she was eight months old I was having luch with my mum when she started to have a seizure... starting in her left arm and travelling throughout her body.... she was tried on medication after medication, she is now on a combination of five medications and one emergency medication. But, her seizures arent controlled, she has statused once and has over twenty kinds of seizures.... she has between five and fifty seizures a day. She was diagnosed with CP at two months old, normally in the UK they wait until at least 2 years of age before a diagnosis.
    The good news.... Megan learned to sit up with support at fifteen months old, sit alone at two years... crawl at three.... walk with a frame at five... walk unaided at seven.... dance at eight!!
    She learned to talk at a year old.... she now sings almost all the time!
    She goes to a special needs school and has hundreds of friends, she even has a facebook page!
    Her ambition is to marry all of JLS.....
    She is a beam of sunshine.
    Its not easy, she can be very demanding and I spend my life trying to keep her out of hospital, she has to be watched 24/7 and has to wear a protective helmet all the time.
    But, when she comes out of school laughing and shouting 'hooble, toodle do' to her friends, when she says 'your my best friend mummy', when she kisses me..... everything is worth it.....
    If you want to talk, vent or ask anything.... please contact me.
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Dear Lioness,

    Many thanks for your truly amazing story. As I read your story the sunshine sure did beam off the page. I am so happy that your princess is progressing well and that she still has a few JLS band members left to marry. Understanding your steps regarding the time frame for Megan to do lets say
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    The latest EEG results have shown that there has not been any changes to be concerned and when asked should a MRI be carried out, advised that this would not be of any further use, even at the age of 2 years (my baby will be 1 in May this year) I am very pleased with the EEG, but having no confidence in the Trust and/or being sceptical are they basically giving up on my baby.

    Although the medication was changed recently and started immediately (no weaning off) my baby continues to fit. The fits are still frequent and are more now that *** seems to disappear to *** own world and then back again. The eyes still flinch in sequence with *** arms and hands. What has changed is that the star fit has stopped and the distress of them for *** removed. The fits have been continuous for many months now, and as much as I press the professionals nothing has changed. Same old words
  • renacahill
    renacahill Community member Posts: 145 Courageous
    Hello Mrs Fox. I am glad the EEG hasnt shown much change, but sorry your little one still has these fits. My grandson did go through a phase in his first year of having vacant episodes and rolling his eyes up at the same time, only lasting a second or two but 60-100 a day. He did grow out of them in that first year so I hope the same thing will happen for you in the end, or at least get them well controlled.

    Things do get gradually better wrt having a disabled child, but the first year or two is incredibly difficult, especially as you have had such a traumatic time, and the knowledge your baby could have been saved from the brain damage. tbh the grieving is something that goes on no matter what, but you just get used to it and see lots of lovely things and progress.

    Brainwave is lovely and my grandson goes there every 6 months or so and it really helps to have a plan to work with. Also they can point out where your baby has weaknesses and how to combat them. Elli's trunk is so much stronger now since following brainwaves directions. Have you also looked into Anat Baniel Method? It is a very gentle but effective therapy and can be used alongside conventional physiotherapy. She has just published a book (after 30 years of practice!) called Kids Beyond Limits. If you can read this and think about this therapy, there are practitioners in england. Elli has had this and his movements are becoming freer and more varied. His speech and sleeping became better. The younger ABM is started the better.

    Hope things start to improve for you soon.

    kate x
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Dear Kate,

    Thank you for your comment. I have taken your advise and ordered the book from Amazon and should be with me soon - Again Thank you.

    Got a telephone call from the hospital, and they are now sending my baby for an appointment to see if *** should have a tube fitted so that *** can feed this way. I am dreading this appointment as I do not want my baby to feed this way.

    Still continues to fit and more so now - Contacted the consultant and told to increase the dose yet again.

    No further update from the solicitors.

Brightness