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Baby with disabilities after birth

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  • mrsfox
    mrsfox Community member Posts: 76 Listener
    My baby has had the EEG carried out and had a total of 23 sensors placed on the head. We were lucky as the test was carried out awake and asleep. Was not provided any feedback to the EEG and told that it will be a few weeks as a few doctors have to look at the reading. "Few Weeks" !! is that correct.

    Waiting on the CT Scan results, however as mentioned the consultant has passed onto Great Ormond St Hospital for a second opinion.

    Waiting on the numerous blood test results to.

    Have today received an email from the NHS regarding a report I requested. They say that it has been passed to the correct department and that I should be hearing soon.

    Attended G.P as my baby woke up every 20 mins last night and not settled. Does not have a chest infection but prescribed medicine for a cold.

    Kind Regards
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Two weeks ago I was told a referral letter was being drafted and sent so that my baby could see a physiotherapist. I had not had any confirmation so I phoned yesterday only to be told that they had yet to send the letter and apologised for the delay. So if I had not phoned when was this letter going to get there
  • mollymoobarnes
    mollymoobarnes Community member Posts: 107 Listener
    Hiya

    My son Tom was the same - he arched his back, stiffened, screamed and cried, in fact so hard that his hair and clothes would be wet through with sweat. They told me it was colic but it went on and on for months and months, until he was 10 months old when it seemed to start getting better. At the time we didn't know Tom had cp but what I can now see, given his cp diagnosis, is that because Tom has cp the tone in his muscles in his mouth and throat are a little floppy and the tone in his tummy muscles is high so when he drank milk - when he breastfed and later when he was bottlefed, he would gulp air down with his milk because he wasn't able to latch effectively (we could hear the air going in but not even a lactation consultant could help improve the way he fed) and then he wasn't able to get it back out again, no matter how upright he was or how much patting and rubbing I did. The more uncomfortable he was the more his muscles would stiffen therefore making the wind in his tummy even more uncomfortable and even more impossible to pass. It changed when he grew a little and also when he started having a thickener in his milk - this made the flow much slower so he could take it at his own pace and this seemed to prevent him swallowing so much air.

    Have you though of asking to see a speech and language therapist who specialises in eating and drinking to see if they can assess how your baby feeds and therefore how they might be able to help get her more comfortable regarding any possible wind?

    Good luck with it all - I hope the results you are waiting for help to give you a better and clearer picture of what is happening with your little one so that you can start to get the help you need.


    Maria xx
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Dear Maria,

    Many thanks for your story and a great idea regarding the speech and language therapist. My baby does at times miss hooking on to the bottle, but once there appears to feed fine, but could be intaking access air - Thank you

    Wram Regards
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Rang the consultant who has informed me that the CT scan and EEG have confirmed cerebral atrophy and focal seizers, that my baby
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    My baby’s seizures continue and now evident in both arms, and legs and eyes flinch. I’m not happy but advised to continue with what the professionals are telling me.

    The Hospital has also now admitted another blunder where a SUI was never recorded as per the policy documented by the trust. My baby was born in May and the report should have been concluded within 60 days. 5 months latter and I receive this feeble excuse of an apology– The following email was written to me by the Maternity Risk Manager.

    Thank you for your e-mail.

    To clarify:
    It is my understanding that an SI is logged onto the STEIS system by NHS London, this incident was not reported to NHS London.

    An internal investigation was started into ***** condition at birth but the lead unfortunately left the Trust and the report was not fully written up at that time in the Trust’s format. The investigation report is now in the process of being completed, this follows the same format and process as an SI.

    We do not have a ‘local internal departmental log’ for serious incidents to my knowledge

    I can only apologise again for the delay in your receiving this report and assure you that we are taking the necessary steps to complete this work as soon as practical.
    Many Thanks

    NHS London SUI Policy (Pdf document) http://www.london.nhs.uk/webfiles/Corporate/Serious Untoward Inciden...

    I am still waiting on receiving a letter to see the neurologist I know it’s early so I keep waiting.
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Contacted and spoke to the "Head of Risk" at the NHS to say how discusted I was with the response from the Head of Merternity. Turns out that an investigation was started however the person carrying out the investigation was a contractor and was not fully updated/trained with the different reporting systems in place and left before completing. The report was then just dropped and left until I wrote to the NHS requesting a copy of the SUI. I have been told that the report will probally take around 60 days to complete as part of the report will include interviewing all staff that came in to contact with me. The SUI report will tell me what the "Hospital thinks" went wrong on that day.

    I was asked by the Head of Risk how my baby was and this is where I mentioned that I was not happy as I have continued to mention to various Doctors, consultant, etc that I thought my baby was in pain, and not happy that my baby
  • renacahill
    renacahill Community member Posts: 145 Courageous
    Good on you for fighting for your baby and to find out what happened. Its a pity it has to be like this but negligence does happen and people have to be held to account to stop it happening to others. As you say, you know something is not right with your baby so its as well they do immediate investigations, but i feel very sad for the stress this is causing. You need all your energy to help your baby not waste it fighting people like this so I hope things get sorted out on that front at least and the ?seizures are controlled.

    Its not always like your experience, my grandsons birth could not have been forseen and they got help straight away and the help we have had since the birth has been very good. Its never enough though and we have also had to get private therapy and work very hard ourselves on therapies, but it is worth it in the end.

    x
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Dear Renacahill,

    Thank you for your supportive comments, and yes it is detracting my energy having to battle all the proffesionals - constant.

    Good on your grandson and v glad he is doing well.

    Warmest Regards
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Hello *****

    Many thanks for taking the time to give me an update during such a difficult time. I am so pleased to hear that ***** and ***** are being well looked after. I very much hope that ***** is well enough to return home soon.

    Best wishes

    *****
    Head of Patient Safety

    Sent: Thursday 3 November 2011 10:28


    Dear *****

    I have received a verbal apology and a reason as to why the Trust failed to report and investigate the incident as per the policy link below, and you are correct with your understanding that all now appears in place to obtain the hospitals report which I believe will show fundamental mistakes which caused or contributed to ***** cerebral palsy.

    I
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Continues *** stay in hospital and the current combination of medication has failed to reduce or stop *** seizures. Monday they are transporting ***** to St Thomas Hospital with an MRI scheduled for Tuesday morning. More blood and urine tests have been taken and along with *** medication to try and control the fits they are now giving *** vitamins.

    The trust has now asked for a meeting with me and family members, however I am currently 100% on attending to my baby
  • Sophiasmum
    Sophiasmum Community member Posts: 1 Listener
    Mrs Fox
    I sent you a lengthy reply last night, having read of your very upsetting situation. Unfortunately the Scope site crashed or some such and my reply was lost. Very frustrating and I don't have time to add the emotional stuff now, but I would just like to impart some very valuable information for you.

    Re suing - a friend of mine has just won her case against her healthcare provider - similar negligence at birth. But be warned, it has taken nearly 3 years and was very draining on the family whilst worth it in the end.

    Re physiotherapy - get immediately onto your Paediatrician. From my experience with my daughter (who has acute CP) they are the top of the pyramid for your child's healthcare and it is ultimately their responsibility to provide the best service to your child. Request an immediate referal for a paediatric Physiotherapist and Occupational Therapist.

    Re communicating with health professionals - always make a note of the call and discussion and who you spoke to - you might have to refer back to this (especially if pursuing legal action). Always be consice and direct with your request and explain your dissatisfaction in the politeist way possible. Ask them what action they will provide to ensure that the situation is sorted. Ask for a time to ring back to check it's been done as promised etc. But be gracious, tell them you understand it's difficult but as your baby's parent you need to know and your baby has the right to the best care possible as you know they appreciate.

    Re Disability allowances. If you have Carer's Resource in your area, ring them and they will come and sort it out for you. Your baby will be eligible for DLA (it just depends which level) and you will be eligible for Carer's Allowance if your baby recieved the middle or highest level of DLA, if you earn less than, I think,
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Dear Sophia's mum,

    I do very much appreciate you spending some time with your comments. I have noted some of the comments down and will follow then up as I belive they are very valid and good points - Thank you again

    (I am so, so, please for you baby - well done to Sophia and mummy)

    cranial manipulation
    Carer's Resource DLA
    Portage


    Warmest Regards
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    My baby is still in hospital and still continues to have these seizures, and what has been very distressing for me is that she has been a pin cushion all weekend.

    The hospital has tried over 20 times (canulars) where they have tried to get a line in to the vein however the needle has come out (tissue) they even managed to hit a artery by mistake, and all the time my baby has been awake and feeling the pain. The hospital then made my baby have some hair shaved from the head and tried in the head, but again that failed.

    The promised bed at St Thomas hospital for the transfer today has been cancelled as they do not have a bed available. Now I hoping that the MRI still takes place Tuesday as promised.

    The reason for the canular is so that the medication my baby so needs can get straight in to the system (loaded) and then to see if this will stop the seizures. The loaded dose can only be effective this way. So because they cannot get this administered this way, they compensate by giving orally which I have been told by the professional that this will not work. The hospital needs to get this done so that they can rule out something, but as described since my baby admission this has not worked, and my baby continues to have seizures. In fact to me they now appear more aggressive, more of a jerk, and now the facial muscles move
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    The senior registrar last night said they were trying to find out what time we would be transfered tomorrow for the MRI scan at St Thomas hospital it will be 07:00 or 08:00hrs.

    I am so discusted that my poor baby had to endure over 20 attempts to get a line in for her medication over the weekend, to include having a part of *** head shaved and an attempt to get a line in *** head, only to be told yesterday by the senior registrar that the dose required can be administerd orally. I was fuming and ask why, and all they could say was that was the information given by telephone from the nurologist at St Thomas hospital -why!!

    Yesterday I also challenged the senior registrar last night on doctors rounds, and without going in to finer detail with all my questions, 90% could not be answered as she kept saying this is not my field of expertise, I deal with chests, and all the instructions are from St Thomas and you will have to discuss these points with the nurologist tomorrow.

    I am now at St Thomas hospital and I am so scared my baby will not wake up, I am really worried. I'm also really worried with what they may find.

  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Just left my baby, held ***hand whilst *** fell asleep. The MRI will take a while, not allowed with ***. Will be two hours and will meet *** in the recovery room. I have been told that my baby will not cone home until they get to the bottom of her fits. Hurry up two hours..
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    The worst day of my life as I have been told by St Thomas hospital following the MRI that my baby has CP in both arms and legs and both sides of my babys brain have been damaged due to the lack of oxygen at birth.

    They have also failed like Lewisham Hospital to get a line in to *** body to take the urgent dose of medication - to see if this will stop *** fitting. St Thomas hospital has also tried in my baby's head and agained that has failed. Now there is talk that my baby may have to be put under again to get a permanante line in (did I not say to Lewisham that whilst my baby is under for the MRI can they not carry out this procedure - No they said as the medication given to my baby in *** mouth will be fine)

    I have not asked because I do not want the answer but need to know what the medical severity of the MRI scan was 1 - 8 where 1 is the worst.

    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.

    Whilst I had the meeting late afternoon yesterday it still has not sank in what I have been told. I am devistated.

    I love my baby x
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    Just held my baby's hand and watched *** fall asleep and now *** is being taken to theater to have the pick line fitted. Why this could not have been done yesterday. I'm so upset (hope my baby wakes up)

    This will be required so that they can treat my baby with the medication at the right high dose and straight into the blood stream..
  • mrsfox
    mrsfox Community member Posts: 76 Listener
    The pick line has been fitted - stiched in and now we are waiting on the tests to come back to see how much of *** medication is in *** system. Once this has been confirmed my baby will get the loaded dose through *** pick line and praying this will start to reduce/stop *** seizures.

    My baby has also had the EEG carried out. Worried with what they may find.



  • renacahill
    renacahill Community member Posts: 145 Courageous
    Hello mrs Fox. You are all going through the most awful time of it at the moment and my heart goes out to you. I pray they will bring the seizures under control and everything settles down for you all. I think you have been treated very badly all through this, it is disgusting how things have gone for you. It is not always like that believe me, my grandson had the best treatment available at the time. The MRI results are very upsetting but its not always so bad with the outcome. Babies are very resilient and seizures can stop with proper medication.

    The hospital should have a chaplain or priest to talk to you if you have strong religeous views, and sometimes this helps.

    kate xxx

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