Baby with disabilities after birth — Scope | Disability forum
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Baby with disabilities after birth

mrsfox
mrsfox 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
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Comments

  • mrsfox
    mrsfox Member Posts: 76
    Sorry the apgar score at 1 min should read <4 - Thank you
  • phil1972
    phil1972 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
  • mrsfox
    mrsfox 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
  • renacahill
    renacahill 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.
  • mrsfox
    mrsfox 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
  • mrsfox
    mrsfox 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
  • mrsfox
    mrsfox 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
  • mrsfox
    mrsfox 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
  • mrsfox
    mrsfox 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
  • renacahill
    renacahill 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
  • mrsfox
    mrsfox 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
  • mrsfox
    mrsfox Member Posts: 76
    Finally the consultant has said my baby has CP - and it
  • ScopeHelpline
    ScopeHelpline Member Posts: 207 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
  • mrsfox
    mrsfox Member Posts: 76
    Thank you SCOPE - Moderator

    Kind Regards
  • mrsfox
    mrsfox 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
  • mrsfox
    mrsfox Member Posts: 76
    Things have changed since my Consultant
  • renacahill
    renacahill 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.
  • mrsfox
    mrsfox 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
  • mrsfox
    mrsfox 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.
  • mrsfox
    mrsfox Member Posts: 76
    Contacted my consultant as I was not happy my baby

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