Parents, carers and disabled parents
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Baby with disabilities after birth

mrsfoxmrsfox Member Posts: 76
My main priority is trying to understand today what my babies prognosis is and what the future may be for my baby. I keep reading that you have to wait for milestones, but I dismiss this as many other's including TV documentaries can sum up/conclude a firm diagnosis at an early stage. My baby is now 5 months old. Two hours appox before being born a midwife confirmed that the baby had pooh in me, I had hbp during my pregnacy. Once in the delivery room various events took place. My babies FHR was up and down, the FHR Monitor became detached, the midwife inserted something in me and all blood was on the floor, and I kept saying I felt like I wanted to push but was being told, no not according to the monitor. At one stage I told the Midwife I really felt unwell and wanted to pass out. The midwife instructed my partner to look down there as the babies head was there, then it went back in, and kept doing this. The midwife said to expect a funny shape head, and to be ready to hit the red button IF instructed.My baby was born - hit the red button - my baby was floppy, had a white chest, and did not cry, floppy, the midwife just held her. I kept asking was my baby ok, but had no reply. The midwife put my baby on a table, and made no attempt to clear the airway. The rush team took over and performed this task. At 1 min the apgar score was <1 at 5 min the score was 5 and at 10 mins it was 7. HIE Grade 2 neonatal encephalopathy, severe perinatal asphyxia, sepsis suspected, grunting - transient, at delivery was hypoxic, a few hours after birth clinical seizures lasting 4 days Cord gas Arterial pH 6.7 and Venous pH 6.8. 1 day of ventilation. Cranial ultrasounds findings showed brightness of the midline. After 12 days we were both discharged and since then my baby has had about 5 Cranial ultrasounds where they are monitoring access CSF in the section mentioned. The CSF has today remained the same in size and continue to be an outpatient. My baby does not sleep well, has stiff legs, pokes toungue in and out on occasions, and has a stare that I just can not describe (not sunset eyes) just does not look right (not all the time) arm appears to turn in a little, and head can just drop. I would also welcome your views as I would like to progress a medical negligence case, why 1) Because I want the best care for my baby now and for the future, applying to the court for the award when my baby needs something, I want to give my baby the best money can get. 2) If the professionals are at fault I do not want anyone to go through this ever again - I have the view that my baby was normal prior to birth. Thank you

Replies

  • mrsfoxmrsfox Member Posts: 76
    Sorry the apgar score at 1 min should read <4 - Thank you
  • phil1972phil1972 Member Posts: 1
    Hi
    My daughter was born 3 and a half yrs ago. She was born via crash section as FHR deteriorated over a 10 hrs period before the hospital took action. She was just clinging to life when born and was placed on a ventilator for about 4 days. She had siezures for the first night and, as a consequence, was sent for an MRI scan. The scan confirmed damage to the brain caused by hypoxia (cord was round her neck 3 times).
    To cut a long story short, we too had no idea what the future held and to this day we still don't know. You can only gauge what is wrong when they start to miss their milestones, until such time just enjoy your baby and worry about it when it becomes a problem.
    My daughter still cannot walk, talk, sit, stand etc but I try not to get hung up about how late she is in developing, she is behind but will catch up in her own time with the help and support from all the professionals around her.
    Caring for her and trying to lead a normal life is very, very hard and I never though I was the type of person who could cope with a disabled child but here I am 3 years in and still going.
    As for the claim, I think you should speak to a solicitor who deals with mediacl negligence asap. If it was a mistake then some heads need to roll to prevent it happening to another. Our claim is being handled by JMW of Manchester.
    I know this does not give you the answers you are searching for right now but unfortunately only your child and time can give you those.
    Hope everything turns out OK for you all.
    Phil
  • mrsfoxmrsfox Member Posts: 76
    Hello Phil,

    Thank you for sharing your story - I do appreciate it very much and congratulate you for the obvious heart ache but determination you have shown. I'm keen to continue to hear all stories surrounding similar circumstance as mine, and hoping a professional will come across my post and be able to understand my technical details and provide an idea how the future maybe - I accept all are differant, no crystal ball, and a gaurded prognosis - as to not lead me down the wrong path, but I'm confident the above must provide a mirror to many previous medical histories with the fact's written above.

    Regards and Thank you
  • renacahillrenacahill Member Posts: 145
    Unfortunately its near impossible to predict the outcome of a child with brain injury.

    To illustrate

    My grandson was born after a placental abruption and was hypoxic at birth, fitted, and was seriously ill. His MRI showed only PATCHY damage to his movement centre (basal ganglia). He is 3 and cant sit unaided, needs a gait trainer to take some steps and only says a few words. He has spastic quad CP. He is on the low side of moderate CP.

    My neighbours son had a similar birth but his brain damage was much more extensive and damage to the lobes with the basal ganglia almost wiped out (he was given the last rites) yet at 7 he walks normally, talks normally, runs pretty OK too! He has poor fine motor skills but manages with a computer and is not brilliant at saving himself if he falls, but he looks fab to me!

    Always think of the best outcome for your baby and work to those ends, never give up. Thats all I can say.
  • mrsfoxmrsfox Member Posts: 76
    I showed the midwife this green discharge refered to in the below link when I returned from the toilet, and yet they left me three hours before birth. I remember saying "Isn't this dangerous?" - Crash team "Baby suctioned nasally as copious amoumnts of meconium detected"

    http://www.merckmanuals.com/home/childrens_health_issues/problems_in_newborns/meconium_aspiration_syndrome.html

    Regards
  • mrsfoxmrsfox Member Posts: 76
    Hello renacahill

    Thank you for your story, and appreciate the two different circumstances which have provided very differing outcomes. I know this is a contradiction in terms as I accept your views, never the less I still struggle to accept that the professionals are not able to say my baby has CP and at this current time I get "Your baby is doing well" "We will keep a track on your babies progress" " Come back next month for another scan" etc - Drop the gaurded prognosis and tell me with all the evidence and the physical signs what my baby has.

    I'm still feel very upset as in my opinion I did not get the reasonable care at birth, and the fundamental mistakes made me share this path with my baby. I LOVE MY BABY so, so, much and that will never change, and I enjoy my baby every day, but the outcome is for life which could have been avoided. I do not want someone else to follow me down this bumby path.

    Regards and Thank you
  • mrsfoxmrsfox Member Posts: 76
    I am taking this weekend to decided passing my medical notes to a medical negligence attorney and would welcome your personal stories as above, and your experiences perusing a claim against the NHS Trust.

    I'm fully aware of the heartache, grit and determination I will need, but success or not I need to resolve and draw a line under what went wrong that day, and the possibility my baby will receive the best care money can buy.

    Regards and Thank you
  • mrsfoxmrsfox Member Posts: 76
    I have decided and sent instructions for a medical negligence solicitor to see if there is a case to be heard, and now waiting instructions from the solicitor on what is the next steps?

    I also have another appointment with the consultant soon. The access CSF fluid at the last scan had not changed and the current prognosis I am told is to leave it as the baby
  • mrsfoxmrsfox Member Posts: 76
    Attended the paediatrician and at last I am getting the support my baby needs. For weeks I have asked the consultant, the GP, doctors, etc that my baby needs additional help in the way of a support team. I am sure CP is the root cause to all her pain and the characteristics displayed. This visit to the paediatrician has confirmed (at last) stiffness in the back, and other muscle tone areas that need investigating, so my baby is to get access to a physio therapist for rigorous therapy, professional health care visitor, and access to a club for babies/children with disabilities. I am very disappointed that it has taken 5 months to get any recognition/access to a professional support team that can now work with my baby (and to educate me along the way) to start helping improve the quality of my baby's life. Is this delay the norm? The information I have gathered tells me this should have been in place weeks ago. What is your experience?

    Next step - attend consultant's appointment

    Regards
  • renacahillrenacahill Member Posts: 145
    With the traumatic birth your baby had and the lack of oxygen, no you should not have waited 5 months. The services should have been in place immediately. My grandson had physio visits as soon as he came home from SCBU. Sometimes it seemed too many but it was useful!

    Write a list of questions for the consultants appointment as it is easy to get flustered. Don't expect them to tell you what your baby will be like in the future, they will either say wait and see or give grim forecasts which are often not the case!

    get this book it is excellent http://www.amazon.co.uk/Teaching-Children-Cerebral-Movement-Disorders/dp/1890627720/ref=sr_1_1?s=books&ie=UTF8&qid=1318008964&sr=1-1

    this book is a lot more expensive but i got an earlier edition on ebay (rare though!). The newer edition looks an even more valuable a resource and has more information. Together they make a very comprehensive set. http://www.amazon.co.uk/Finnies-Handling-Young-Child-Cerebral/dp/0750688106/ref=sr_1_14?s=books&ie=UTF8&qid=1318009223&sr=1-14#reader_0750688106
  • mrsfoxmrsfox Member Posts: 76
    Hello Renacahill,

    Many thanks for your advise I will prepare a list of questions.

    Will check out the two mentioned books.

    Kind Regards
  • mrsfoxmrsfox Member Posts: 76
    Finally the consultant has said my baby has CP - and it
  • ScopeHelplineScopeHelpline Member Posts: 209 Courageous
    The starting point for looking at benefits is normally to check out DLA:
    http://www.direct.gov.uk/en/MoneyTaxAndBenefits/BenefitsTaxCreditsAndOtherSupport/Disabledpeople/DG_10018702

    You may also like to call Scope Response to be put in touch with your Scope Regional Response Worker
    0808 800 3333

    Best Wishes

    Forum Moderator
  • mrsfoxmrsfox Member Posts: 76
    Thank you SCOPE - Moderator

    Kind Regards
  • mrsfoxmrsfox Member Posts: 76
    I should find out today from my solicitors if there is a medical negligence case to be heard. They were passed all the medical notes (I had to pay
  • mrsfoxmrsfox Member Posts: 76
    Things have changed since my Consultant
  • renacahillrenacahill Member Posts: 145
    I really feel for you, this is all so upsetting and a very difficult time. I hope things work out. Elliot had vacant episodes and would go limp from the age of 6 months on and off for about 4-5 months. The only lasted a second or two but 70 or more in a day. To say my daughter and I (Elli is my grandson) were absolutely beside ourselves with terror that they would go on a become full blown fits, is an understatement.

    However they did stop and we pray they will never start again. He is now 3. He had 2 EEGs and they both showed nothing abnormal. A friend whos little one has CP said her son also had vacant episodes but outgrew them. Sometimes these babies have cerebral irritation which causes sleep problems and these types of episodes but it is possible they will be outgrown or at least controlled with medication.

    Ask your consultant if it is worth giving baby fish oils. We gave them from very early on, whether it helped we don't know but omega 3 is very important for brain development.
  • mrsfoxmrsfox Member Posts: 76
    Dear Renacahill,

    Thank you for the above, and I will speak to the consultant about Fish Oils - I like the sound of that idea.

    Kind Regards
  • mrsfoxmrsfox Member Posts: 76
    Attended the CT scan and have to say did not enjoy my baby having to be put out completely, however accept this was a necessary and important requirement. As the CT scan was Friday I agreed with my consultant that I was not happy to wait over the weekend to understand the results, I would worry all weekend. The consultant agreed and said a neurologist would be there on the day to talk through the results. What actually happened was the radiologist said to the doctor.
  • mrsfoxmrsfox Member Posts: 76
    Contacted my consultant as I was not happy my baby
  • mrsfoxmrsfox Member Posts: 76
    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
  • mrsfoxmrsfox Member Posts: 76
    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
  • mollymoobarnesmollymoobarnes Member Posts: 107
    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
  • mrsfoxmrsfox Member Posts: 76
    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
  • mrsfoxmrsfox Member Posts: 76
    Rang the consultant who has informed me that the CT scan and EEG have confirmed cerebral atrophy and focal seizers, that my baby
  • mrsfoxmrsfox Member Posts: 76
    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.
  • mrsfoxmrsfox Member Posts: 76
    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
  • renacahillrenacahill Member Posts: 145
    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
  • mrsfoxmrsfox Member Posts: 76
    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
  • mrsfoxmrsfox Member Posts: 76
    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
  • mrsfoxmrsfox Member Posts: 76
    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
  • SophiasmumSophiasmum Member Posts: 1
    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,
  • mrsfoxmrsfox Member Posts: 76
    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
  • mrsfoxmrsfox Member Posts: 76
    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
  • mrsfoxmrsfox Member Posts: 76
    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.

  • mrsfoxmrsfox Member Posts: 76
    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..
  • mrsfoxmrsfox Member Posts: 76
    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
  • mrsfoxmrsfox Member Posts: 76
    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..
  • mrsfoxmrsfox Member Posts: 76
    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.



  • renacahillrenacahill Member Posts: 145
    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
  • mafalamafala Member Posts: 72 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
  • mrsfoxmrsfox Member Posts: 76
    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
  • mrsfoxmrsfox Member Posts: 76
    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?
  • mrsfoxmrsfox Member Posts: 76
    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
  • mrsfoxmrsfox Member Posts: 76
    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
  • edoveyedovey 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
  • mrsfoxmrsfox Member Posts: 76
    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
  • mrsfoxmrsfox Member Posts: 76
    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




  • mrsfoxmrsfox Member Posts: 76
    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
  • mrsfoxmrsfox Member Posts: 76
    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
  • mrsfoxmrsfox Member Posts: 76
    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?
  • mollymoobarnesmollymoobarnes Member Posts: 107
    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
  • mrsfoxmrsfox Member Posts: 76
    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
  • mrsfoxmrsfox Member Posts: 76
    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
  • mollymoobarnesmollymoobarnes Member Posts: 107
    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

  • mrsfoxmrsfox Member Posts: 76
    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
  • mrsfoxmrsfox Member Posts: 76
    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
  • libismumlibismum Member Posts: 13
    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
  • mrsfoxmrsfox Member Posts: 76
    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
  • mrsfoxmrsfox Member Posts: 76
    Fight for everything
  • mrsfoxmrsfox Member Posts: 76
    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
  • mrsfoxmrsfox Member Posts: 76
    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
  • mrsfoxmrsfox Member Posts: 76
    ((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
  • renacahillrenacahill Member Posts: 145
    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
  • mrsfoxmrsfox Member Posts: 76

    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
  • renacahillrenacahill Member Posts: 145
    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
  • mrsfoxmrsfox Member Posts: 76
    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!
  • mrsfoxmrsfox Member Posts: 76
    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
  • fox111fox111 Member Posts: 6
    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
  • johnsteve108johnsteve108 Member Posts: 1
    Thanks for the information
  • mrsfoxmrsfox Member Posts: 76
    Hello Everyone
  • mrsfoxmrsfox Member Posts: 76
    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.
  • mrsfoxmrsfox Member Posts: 76
    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
  • mrsfoxmrsfox Member Posts: 76
    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.

  • mrsfoxmrsfox Member Posts: 76
    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
  • LionessLioness 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.
  • mrsfoxmrsfox Member Posts: 76
    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
  • mrsfoxmrsfox Member Posts: 76
    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
  • renacahillrenacahill Member Posts: 145
    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
  • mrsfoxmrsfox Member Posts: 76
    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.
  • renacahillrenacahill Member Posts: 145
    Hello
    I really don't know where you get the mental strength to go on, it all sounds so difficult for you all especially your poor baby. I just wish things would get a bit better and more stable with the little one, you must all be exhausted.

    Don't worry about a feeding tube. Do they mean one through the abdominal wall..a PEG?

    My grandson had one done in March and we were dreading it and so unhappy that despite all our efforts to get extra calories in and the fact he can eat and swallow safely we just could not get his weight onto the charts. He has a skinny gene! Anyway it took 1/2 an hour and a few days in hospital, but has bounced back really quickly and we are starting the process of building him up with overnight feeds, eating in the day plus top ups through the tube, and extra fluids in the tube as he is a very poor drinker. Of course he goes to nursery and picks up a bug every week, affecting his eating and sometimes causing vomiting, but its not so bad now as he just gets what he needs in the PEG. We hope that when he puts on enough weight and starts to eat more he can have it out, he doesnt need it for medical reasons such as aspirating.

    Look on it as a way of taking the stress out of feeding your baby, and also being able to get medications in him without stress and keeping him safe from chest infections. Tubes are not necessarily for always and the way our **** has bounced back has helped us realise it is the only way to help him have more energy and even stability. Its early days, but the op went off smoothly and the wound is nicely healed and easy to manage so don't be afraid and delay it as long as we did. We wish we had done it earlier, but he might have put weight on so we didnt rush it. Unfortunately when he started nursery he caught all the bugs going and lost weight! Thats when we decided to go for the PEG.

    Kate xx
  • mrsfoxmrsfox Member Posts: 76
    Hello Kate,

    Many thanks for your comments.

    I'm concerned more so now as I am thinking it is also more of a medical reason as to why my baby will have to be fed through a tube PEG.. My baby always seems to have a chesty aspirating and one of ** medication is to control the reflux. I support you reasons behind the PEG, but hope this is not yet another path we have to go down.
    The splints have been made and fitted - a requirement to be worn as often as possible.


    I think at this stage it is important for me to say that this is my story and that this is my life and the way I feel. I do not want anyone to detract from this as I know there are people a LOT worse off than me and my baby. (I genuinely understand there are many people with other life threatening and disabilities) Not asking for your acceptance- this is mine and baby
  • LionessLioness Member Posts: 10 Listener
    :) Im happy to share my daughters story and glad its given you some hope... feel free to ask anything, hope your little one goes from strength to strength. Stay positive! x
  • mrsfoxmrsfox Member Posts: 76
    Dear Lioness - Many thanks for your kind words a may just be intouch for some help and advise - Thank you

    Making arrangements for my bubba's 1st birthday - wow that has sure come around fast.

    Attended St.Thomas hospital this week, and they have again changed the medication. My baby's fits started to get much more frequent
  • mrsfoxmrsfox Member Posts: 76
    Attended Brain Wave for the two days and have to say was a little disappointed. My personal thought was it was a very professional expensive physio therapy training days. All the staff there were very polite, understanding and professional 100% . Would I reccomed Brain Wave, yes but would not book again at that cost. Another angle would have been for me to have hired a personal physio to come to my home, and worked on my baby for appox 14 sessions at 2 hours long.

    Since my last update my babies medication to control *** fits have been changed again, however still continues to fit.

    Tomorrow, I attend and find out if my baby will need to have a tube fitted (peg)

    My baby is still not able to sit up and *** head control remains the same.

    No update with regards to the solicitors

    Regards
  • mrsfoxmrsfox Member Posts: 76
    The hospital visit lasted all morning and they have confirmed that my baby is aspirating and holding the food under the tongue. They have said a peg will not need to be carried out at this stage and have suggested a different feeding method/food. They will monitor progress and have said the situation may not improve and a peg fitted. Very mixed messages and emotions.

    The other purpose of the visit was to show our documented records we have kept of our baby's fits and to actually show them the fits. Five NHS staff met with us and have again concluded to change *** medication. Part of the PAN family of drugs now given. (this course started Friday) This morning I am very down as yesterday my baby was very bad and today *** just is not the same, very floppy and not responsive, where has my baby's smile gone, *** is just not all there. I have been told that it can take two weeks to work (well still fitting since Friday and today)

    I have to leave my baby tomorrow to go to work tomorrow (no work no pay) and I am really down because I feel I should be with *** The hospital have said to keep a close eye on her for the first few days.

  • mrsfoxmrsfox Member Posts: 76
    Sunday - Waiting until 20:00hrs to phone the consultant at the hospital as that is when he starts his shift tonight. Since my baby has woken this morning, *** has now had 56 fits. (this is with the new medication and at the low level!)
  • mrsfoxmrsfox Member Posts: 76
    Have now been asked to get my baby straight up to St Thomas Hospital....leaving now
  • mrsfoxmrsfox Member Posts: 76
    Spent two days in hospital, and the result was to again change the medication and levels. My baby today is back to *** old self giving big smiles, and the fits have reduced but continue. Will my baby have fits all *** life then?

    No update from the solicitors, might gic=ve them a call next week...

  • renacahillrenacahill Member Posts: 145
    Hi there.
    Glad to hear your little ones fits are being better controlled and that he is back giving you his lovely smiles :-)))

    Hoping things start to get better for you both, take care
    Kate
    X
  • mrsfoxmrsfox Member Posts: 76
    Hi Kate,

    Thank you for your comment.

    Just coming back from St Thomas as my baby had *** second eye appointment. The good news is that *** eye site and behind the eye are all good. Even the consultant said that considering the amount of fits this is very promising. The BAD news is that my baby will have to wear glasses to try and correct/pull in the right eye. The right eye tends to on occasions drop and by wearing these glasses this should correct. The consultant said that *** does not have to wear them all the time, just now and again. I would have thought in order to work you would have to wear them as oftem as possible
  • klixklix Member Posts: 6
    Hi, I have just read through your whole story and I know that your child has been blessed with a fab mum! My son was born 9 years ago after a wonderful pregnancy but it all went wrong. He had a massive brain bleed (grade 4) (thanks to negligence) and needed emergency brain surgery to survive. He ended up having a shunt fitted when he was 4 months old to deal with the hydrocephalus and the prognosis really wasn't good. He used to cry 24 hrs a day until the shunt was fitted as it managed to take the pressure of his brain and made him feel so much better. He has had many, many operations but the one that made such a difference to his (and our) lives was having the feeding tube fitted. It took all the worry of feeding away and the weight gain was amazing. He cannot sit up unaided, walk or talk and I will never be called "mum" but he is the happiest most settled child I know. A lot of this is due to the amount of physical contact we have made sure he has - massage, snuggles and physio all work. The spasms can ease with time but any reflux or wind will make these more painful and again the feeding tube can help with that - the sound of wind coming out of that tube never fails to make him giggle. On a more personal note I can't help but notice that you rarely mention how you feel in yourself, this worries me for you. Please, please, please take time to acknowledge your grief, for that is what it is. You have not got the child you were expecting and that is the hardest thing to ever face but the earlier you try the better you will face the challenges coming your way. It is the oldest cliche in the book but our children are a blessing but as I am told so so often, if we don't take care of ourselves, who will???? As with previous offers you've had, please contact me if you think I can help in ANY way - one super mum to another!!!!!
  • mrsfoxmrsfox Member Posts: 76
    Hello Playit - Many thanks for your comment and your mini story. Your son sounds an amazing bundle of fun that has a very brave and loving mum. Kind Regards.

    It's been a while and to be honest not much has change. My baby continues to fit, constantly appears uncomfortable in that, well the best way to describe is that ** sounds like a very weak cats meow constantly, just never seems contempt. ** has not put on much weight and continues to have on/off chest infections. The tube has not be progress on the doctor
  • mrsfoxmrsfox Member Posts: 76
    Medication changed again and a visit to St Thomas soon as we need to been shown a special diet that we have to learn and start giving to our baby. ** continues to fit and still has a wheeze chest. ** not often seems relaxed and does not cry but makes sound - the way I describe like a cat meowing. The car, walks does not make much difference and always seems uncomfortable. *** tongue appears to poke out more often now.

    No meaningful updates as yet to share with you regarding the solicitors
  • mrsfoxmrsfox Member Posts: 76
    My baby has now been on a medical diet (St.Thomas Hospital) for the last two weeks and with the objective for *** to come completly off *** medication. I am sceptical howver will give anything a go. The diet is called KITAGENIC. I am told only 250 babies/children in the UK are on this special diet. It's very hard going as each item has to be specifically measured - it's all fat contents and is not allowed any carbs. The positive is that you can make may I (as I do) and freeze them. Today I have already prepared sixty.

    Was very upset Friday as I had my baby measured for a wheel chair. Can not belive (two in May) that this was required. I'm sorry and this is just my opinion but does not matter how you dress this they all just look so alwful.Straps here, straps there, head restraint, etc. I know it's best for my baby and that is all that matters.

    I'm lucky to have a car, but the car I have will not fit the wheel chair required. I have contacted Disability Mobility and they are refering to a manager.

    The solicitors have completed all the investigations and have now sent to Lewisham NHS Trust. They have a few months to reply and can then apply for a further three months.
  • mrsfoxmrsfox Member Posts: 76
    My partner and I both had telephone interviews about two weeks ago (was a very low day for me the next day as it was a full blown reminder of the day my baby was born (I love my baby that was the fantastic part) but the flash back to the poorest of care we all received and looking back just how bad we was treated it discusses me. I know my baby would have been normal and doing all what my friends babies are doing now if it was not due to the overwhelming lack of care and negligence) and today confirmation that we both also have a claim against the NHS trust. The main negligence case is now with the NHS trust (Lewisham hospital) and await their response. (Do you reliase that still to this very day the same people that was suppose to look after me could still be working there - that makes me feel so sick and worried for other parents to be) As per my previous comments - yes it is all about the money because it will buy my baby the best that you can buy. The money is paid into the court and technically it is all my baby's money for *** care now and for the rest of her life and for me it's knowing that when my partner and I pass *** will continue to receive the best care ever - That is what all this fight is about. In the mean time my partner works full time and I am also working five days a week to make ends meet. It's hard but so is life.

    I am continuing with my baby's diet KITAGENIC and I'm noot sure. My baby still has about the same amount of fits and it is a lot of work preparing the meals. This Sunday will make up a month
  • wagon159wagon159 Member Posts: 1
    Having just read through your post just wanted to say thank you for your open and heartfelt messages. I hope that you yourself are keeping well and that your little one is in better health. As a mum of a child with cerebral palsy I can relate to a lot of what you have said. we too have started the process of looking into our childs birth and hope to get a socilitor to look into our case for us if for no other reason than to understand what happened to our child. please keep us enformed of your progress...i am sure you have touched many people who haven't commented as well
    All the Best
    XX
  • Toby1Toby1 Member Posts: 11
    Hi. I have just read through your posts and I can't believe how much you have had to fight for. My son is 6 months old and suffered a birth injury. Apgar 1 at 1 minute and 5 at 5 minutes. Pale floppy, not breathing and covered in meconium. The trust have denied all blame and I am in process of filling out legal aid forms from solicitor.

    However although my worries are similar I have had help with my son from the minute he was born at the RVI in newcastle. SCBU were amazing and brain damage was confirmed through MRI when he was only a week old. Grage 2 HIE with moderte brain damage on both sides of brain affecting all 4 limbs.

    I am still getting over the shock and heartache. Like you I had an uneventful, low risk pregnancy and should have given birth to a healthy child. He does not appear to be having seizures and his eyes seem great but I have been warned that problems may still appear due to his young age. He often holds his hands in fists when excited and has tight hamstrings.

    But I am pleased to say he is my miracle. He has good head control and strong core, rolls from tummy to back, rolls onto his sides, if he concentrates he can open his hands to grab toys ( apart from index finger) and is a very bright baby. Smiled at 6 weeks and giggling by 11 weeks. He also follows objects well.

    He is still young to be sitting but he trys. His tight legs mean that he flings his body backwards.He also loves to bounce when being supported standing. He does have minor feeding issues but is eating solids well ( obviously well blended). I can honestly say he is my miracle. I have a long way to go but I have one determined baby.

    I Hope this message finds you well and that your child has improved. I am so sorry that you have had so much extra stress added to what is already a very difficult time.

    Love and best wishes
    Tracey
  • CommunityTeamCommunityTeam Posts: 87

    Scope community team

    If anyone has had experiences similar to the above, you can get advice and support by posting a new discussion in our 'parents and carers' discussion group.
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