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Baby with disabilities after birth

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  • mafala
    mafala Community member Posts: 71 Listener
    I was in your situation nearly 9 years ago and I did not know where to turn to get help with my very unsettled baby. He was in shock from the HIE and extremely irritable. I was recommended to take him to the Osteopathic Centre for Children and it was the best recommendation that I was given. Treatment really calmed him down and he was a lot happier and more settled. They specialise in the treatment of very sick infants as they also treat premature babies in Barnet Hospital and North Middlesex. Here is the link to their website:

    http://www.occ.uk.com/index.php
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Dear Kate, Mafala,

    Many thanks for your support and updates, by replying to every comment it is my way of confirming I have read your stories and very much appreciate all comments.

    Kind Regards and Thank you
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Hello,

    As a family we were all devistated to have been told that *** has CP in both arms and in both legs, and that *** has brain damage in both sides of the brain. *** continues to fit and yesterday *** had 62 fits in 24hrs, and this morning has had 25 fits.

    Lewisham hospital did not pick up the brain damage in both hemispheres, nor did they pick up the damage in all four limbs dispite our continued request for an MRI scan. We were told everything can be picked up with our current processes - numerous Caraial scan, CT scan and EEG all the above was never picked up. The MRI was always the gold standard but we were told No (we even offered to pay private and told again you would not gain any further information)

    Lewisham also despite many attempts to say ("we are not happy with the amount of seizures *** was displaying") continue to treat *** as an outpatient and many telephone conversations. We were told to keep continuing with the perscribed medication. We continued to say it is not working. Lewisham was told from the start it was a little flinch in the right hand, then progressed to the arm, then the leg, then the eyes, then the face and that they started to get more vigorous, but again Lewisham keept saying take the medicine. We was also very worried and asked if the fits would damage *** brain further, however the confirmation from Lewisham was that it would not.

    At Lewisham hospital *** was treated like a pin cusion as in 12 hours *** must have been pricked over 20 times to get a line in for *** medication, all the time *** could feel the pain and I could also feel *** they even managed to hit an artery by mistake, it was very distressing. They could not get a line in and so they said they will try in *** head. They shaved some hair off *** head and again failed to get the line in.

    The next day they tried and again failed. The senior registrar said that we no longer need to get a line in as we can give *** the correct loading dose orally. I was absolutely livid to find out that we had to go through all this pain and suffering only to be told *** did not have to have a line in.

    I said to the senior registrar that night that *** is having *** MRI tomorrow and whilst *** is under the anesthetic to put in a pick line. Please do not miss this window of opportunity. She said it was up to the people as St Thomas but would pass on my message. *** had the MRI and they did not put in the pick line. Yesterday *** had to be put out again so that a pick line could be stiched in, and advised this would be an absolute must in order to get the medication needed and at the correct levels. (St Thomas confirmed orally would never had worked thats not what Lewisham told us)

    Please can you kindly provide me with an update to the SUI report?
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Dear ***

    At present I am awaiting witness statements from those involved. These are part of the process, which as you have already been advised was not completed. We will then convene a panel meeting to review all the evidence to ensure we have captured all relevant details before completing the report. I will keep you informed of progress weekly, as discussed with the Trust Risk manager, ***.

    The possibility of arranging a meeting between the family and ourselves was discussed with *** before *** was transferred to St Thomas
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Still in hospital (week tomorrow) and whilst the seizures have reduced they still continue. They are more likley to happen when my baby is relax or just dropping off to sleep, however still apparent throughout the day. They appear systematic - legs, arms, and eyes all move at the same time, and now the eyes roll up. They appear quiet jerky and vigorous and I am very worried.

    The pick line got blocked yesterday, however they managed to clear this morning.

    Have been told that my baby needs to see an eye specialist as on occasions *** goes boss eyed.

    My baby is still very restless and does not sleep for long and I am exhausted.

    Regards Xx
  • edovey
    edovey Community member Posts: 10 Listener
    Hi MrsFox,

    I feel so angry at both you and your daughters treatment. I was almost crying reading your posts.
    You are being an amazing mum by holding everything together and going through this horrendous ordeal. I hope your daughter comes out of hospital soon, you must be desperate to have her back in your arms. I hope the clinical negligence case goes through and you get some financial help to pay for the care that can make a difference to your baby's life.

    My son has cerebral palsy but luckily only a mild form. We have found two companies that have helped us:
    BIBIC is a charity that came to our house and spent the day with my son, and then put in place a series of exercises and stimulating games etc for us to do at home with him. I believe they have their foundations in occupational therapy. They recieved a grant from the national lottery and are currently running an outreach programme to travel to children's homes, and though they ask for a donation it is up to you how much to give. This is there website

    www.bibic.org.uk/

    The next company has helped my son achieve his potential the most:
    www.movementandwellbeing.com/about-us

    This therapy is called 'Anat Baniel Method for Children' (ABM) and works on the principles of neuroplasticity- that is the brains ability to form new nerve pathways and reorganise itself. It is mostly available in America, and there are just 2 people trained in this therapy in the UK, and they are based in London. We have been taking my son there since the beginning of this year and the changes are quite remarkable. The cost is
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Dear Liz,

    Thank you for your kind words and the two suggestions. I am very interested in ABM and will research that more.

    Wishing you and your son all the best.

    Kind Regards
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Dear ***

    As agreed I am writing to let you know the progress of the SI Investigation.

    I am still awaiting final witness statements from those involved in the care of ***. Once these have been received a meeting will be convened to review all the information and the report will be completed.

    Kind regards

    ***

    Maternity Risk Manager
    Lewisham University Hospital




  • mrsfox
    mrsfox Community member Posts: 76 Listener
    After nearly three weeks in hospital my baby and I are now home. I have stayed strong but exhusted. My baby and I watched the Lord Mayor's firework display which was very good.

    My baby has not fitted for three days now and I am so happy, however not sure if the trade off is one of the drugs is making my baby a little drowsey. I have been told this is to be expected and in time my baby will adjust with the medication. My baby has to take quiet a few oral doses of differant medications.

    I've sent off a letter to the medical records office (paid the
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Friday I received a letter from Tim (Excecutive University Hospital Lewisham) providing me with my first written apology surrounding the hospitals SUI policy reporting.

    I have been told that I should receive the final signed off copy around 9th December 2011.

    The SUI report will provide me with what the "hospital thinks" went wrong on the day I entered the hospital to give birth to my baby.

    Regards
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    My baby had *** first Physio session 28/11 and I was very please that these have started, to me it is a very important part of the process my baby needs to improve in any way large or small, however the next avaliable/scheduled appointment is for the 13th December - What's that all about, ever 15 days just cannot be the correct level of Physio for my baby with Quad CP, is it?
  • mollymoobarnes
    mollymoobarnes Community member Posts: 107 Listener
    That's what I have been offered for Tom - an appointment every 2 - 3 weeks. I am supposed to learn what sorts of exercises to do with Tom in the time between appointments so basically I am my son's physio for 17 out of 18 days and then he gets a session with his trained physio and then it's back to mummy physio again! That's in part why I chose to get Tom started with Conductive Education groups twice a week - I knew he needed more than the NHS physio that was being offered.

    Maria x
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Received an email Wednesday from Maternity Risk Manager Lewisham University Hospital
    to say that all the staff that came into contact with me during my birth have been interviewed and statements taken and on Thursday the pannel was having a meeting to discuss all their findings.

    The report will be submitted to NHS London where the final document will be written up and signed off. I have been told all should be completed and a copy sent to me on the 9th December 2011.

    The SUI report will provided me/family with what they think happened on the day my baby was born and starved of Oxygen.

    Regards
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Hello Maria,

    Thank you for your post and love the terminology "Mummy Pysio" Agree 100% that the in-between is for me to learn and carry out the exercises required. However I feel that this should be after a few sessions with the professionals not just after day 1. My view is that my baby should have professional care/pysio twice a week min to start
  • mollymoobarnes
    mollymoobarnes Community member Posts: 107 Listener
    Hiya

    I absolutely agree that It isn't how it should be - our kids should have physio once of twice a week but unfortunately that's not what gets offered. I also agree that it's really daunting to get started after the initial sessions because we have no idea what we are doing really. All I can say is any exercise is better than none, that having a nice massage first to loosen up those tight muscles is a good idea and to try to make it fun. I alsways leave physion with maybe 2 out of the 5 things we have tried in my head and the others lost in the mummy fog that sits between my 2 ears and then I worry that I'm not doing enough. I have only really been able to stop worring since I started Conductive Education because firstly I attend 2 classes a week so he gets 6 hours of one to one time with me working on his mobility and secondly the routines we do are the same each week and easy to remember at home. It's also easy to build into your every day life (although I don't by any means do everything the Conductive Education way as I have 3 young kids to look after and sometimes you do things the quick way, not the right way!).

    It's unfortunate that for the first time ever we find ourselves in need of all the services for our kids that seem to be so short of money due to the economic climate right now - I always thought a child with a disability would have access to everything they need quickly - that they would be a priority. How wrong I was. The fight for everything is just exhausting and nothing comes easy.

    Maria xxxx

  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Hi Maria,

    Thanks for your comment - as with all comments I am so greatful as I do pick out some very good points/ideas. All the best to your family and have a great Christmas.

    Kind Regards
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Today was going to be so special as I was taking my baby to London to see Father Christmas, however also today I have noticed my baby strating to have mini fits again, only ever so slight but the same as when *** first started and spent nearly three weeks in hospital.

    Contacted the consultant who looked after us and have been told to up the medication, and if that does not work we can up it again (sound very familiar)

    I am still going as planned to see Father Christmas
  • libismum
    libismum Community member Posts: 13 Listener
    I have been following your story with that all too familiar feeling of frustration, sadness and anger. I just want to say as a family we are thinking of you and your little one. I do so hope that you both have magical memories of your visit to meet father Christmas........... in our experience sometimes the most magical experiences are the ones that others take for granted.

    best wishes xxxxxxxxxxxxxxxxx
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Dear Libis Mum,

    Thank you for your kind words - Father Christmas was a very magical/special day - We both had a fantastic day - Merry Christmas to you and your family.

    My baby continues to have very slight fits and advised the *** needs to put on more weight before increasing the medication. *** has gained weight but still not enough.

    Lewisham Hospital
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Fight for everything

Brightness