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Baby with disabilities after birth

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  • renacahill
    renacahill Community member Posts: 145 Courageous
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    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
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  • mrsfox
    mrsfox Community member Posts: 76 Listener
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    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
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  • Lioness
    Lioness Community member Posts: 10 Listener
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    :) 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
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  • mrsfox
    mrsfox Community member Posts: 76 Listener
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    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
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  • mrsfox
    mrsfox Community member Posts: 76 Listener
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    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
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  • mrsfox
    mrsfox Community member Posts: 76 Listener
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    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.

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  • mrsfox
    mrsfox Community member Posts: 76 Listener
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    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!)
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  • mrsfox
    mrsfox Community member Posts: 76 Listener
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    Have now been asked to get my baby straight up to St Thomas Hospital....leaving now
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  • mrsfox
    mrsfox Community member Posts: 76 Listener
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    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...

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  • renacahill
    renacahill Community member Posts: 145 Courageous
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    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
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  • mrsfox
    mrsfox Community member Posts: 76 Listener
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    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
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  • klix
    klix Community member Posts: 6 Listener
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    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!!!!!
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  • mrsfox
    mrsfox Community member Posts: 76 Listener
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    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
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  • mrsfox
    mrsfox Community member Posts: 76 Listener
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    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
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  • mrsfox
    mrsfox Community member Posts: 76 Listener
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    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.
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  • mrsfox
    mrsfox Community member Posts: 76 Listener
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    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
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  • wagon159
    wagon159 Community member Posts: 1 Listener
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    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
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  • Toby1
    Toby1 Community member Posts: 11 Listener
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    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
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