Absolutely Terrified — Scope | Disability forum

Absolutely Terrified

drbrunel Member Posts: 16 Connected
Some of you will have read previous post with regards to my wife and baby boy nearly dying this year due to serious complications with pregnancy.

My boy Thoe was born 3 weeks prematute with an IVH grade IV bleed as well as a stroke.He is now 4 months corrected and doing everything a "normal baby" should be doing...

He suffered from hydrocephalus whilst in the special care unit but after various ventricular taps he seemed to correct himself for which we were over the moon..

However, a week ago our physio noticed that his fontanelle was slightly bulding and said that we should see his nearologist at GOSH straight away. They performed and CT scan and various other tests and said that there are some physical signs of intercranial pressure (ie sightly bigger head and raised fontanelle) but no physiological signs ie he is still very happy in himself..They sent us home and told us to keep an eye on him....I am so worried I cant tell you, if he does not get better and he starts to develop other symptoms he will need a brain shunt apparently which will stay with him for life

What is worse, at the time that he may need this surgery , my wife will be going in for life saving surgery as well....

Not sure how much more of this I can take...

Its one thing worrying about my wifes medica problems, but dealing with my wife as well as my baby boy is killing me


  • b8s
    b8s Member Posts: 33
    I desperately want to offer you words which will ease some of the pain which is so evident in your post but can think of none that sound sincere.
    It is really important to find someone you can share this with. When my daughter was first diagnosed I got swept away with life, everything just kept happening and I had no reassurances that the future would be o.k. I had no control over the problems and therefore had to trust others to find the solutions. Only when I reached the point where I could not take anymore, a friend realised something was wrong, and forced me to let her in. Talking did not make my daughter better, or the fear of the future any less, but it did make it alright to be scared, it allowed me to work through the things that were frightening me, and eventually accept that I have to take each day as it comes.
    If you do not have a friend or family member who can help you through this, please talk to your G.P, they can often be of more help than we are aware.
    Please keep intouch.
  • rachelalger
    rachelalger Member Posts: 3
    we had a son 6 years ago and when he was born he had stopped breathing at the time we didnt know how long but it was 25 mins, he was white when he came out and at that point had no idea what was ahead of us,it is really hard at first and it will very slowly get easier as you learn to grow with the needs required, our son is severely disabled and totally dependant on us 24/7 but to care for him the way we do is so so special and it will all become easier in the end, it needs time,their is alot of support out their and it can help you,if you want to talk any time i will try to help,just talking really helps.

  • renacahill
    renacahill Member Posts: 145
    Hello, your fears and worries come across so strongly in your post I really feel for you and your family. First can I say you are not alone in your anxieties for your family, your wife is there for you and your baby even though she is facing an enormous hurdle herself. I am sure she shares your fears, could you talk to each other, or are you bottling it up in the hope of protecting each other, when what will strengthen you is to share instead of being isolated?

    I hope you have friends and especially family who will listen and try to ease your fears. Let me explain how I think the fear thing works. One moment you are expecting the happiest moment in your lives, the birth of your son, the next, there is one disaster after another and you dont have time the physically and mentally to recover between each blow. At the time of writing you are now clearly on the ropes and have no reserves left.

    You also lose the common mindset of 'it'll never happen to me'. Instead you believe 'it will always happen to me'. Once this sets in your life is taken over by fear of what the future will bring and your ability to cope with adversity vanishes. I know its a cliche but talking therapies, relaxation techniques, exercise and fresh air, really can help. It wont make the problems go away but you ability to cope will improve. If you have a faith, you can always turn to the church for help.

    Think too that since Theo came along you have had the most terrible time coping with one trauma after another - but you did that - you're still standing, you coped, and you just have to believe you can do it again, it is going to be hard but you will do it, simply because you have no choice. Through our trauma we took one hour at a time and just got through it. Then eventually a day and a week at a time, dont look further ahead, dont speculate, it will drive you insane.

    Dont think about Theo needing a shunt until it happens. The hardest thing to understand is that worrying doesnt stop it happening, it doesnt prepare you, and it doesnt make it easier. It only makes you less able to cope when the worse happens as you have wasted so much energy. Remember worrying is like riding a rocking horse - it gets you nowhere!

    Having a shunt fitted is a frequently done operation and there are plenty of people walking around living normal lives. Take pleasure in your little boy, its what keeps us all going, those smiles! Hugs for the future.
  • acrossthepond
    acrossthepond Member Posts: 36
    Having read your recent posting, I would like to extend my sympathy to you in having to bear such a heavy load under such enormously difficult circumstances. Unfortunately, as b8s has written, there is no easy resolution to the situation you are in right now. I would like to point out that your son's body corrected its imbalance once before so there is a possibility that he will correct this problem on his own once again. Since he is not exhibiting physiological signs, there is still a reason to continue to be hopeful. He may never exhibit them and things could remain as they are. In addition, medical knowledge and treatments are constantly being developed so he may one day benefit in ways that cannot be predicted right now.

    I join b8s in making the suggestion that you find someone that you can talk with about all that is going on and that you allow them to provide moral support for you. Whether you choose a family member, friend or professional, sharing what you are dealing with will help you get through the difficult times. If, for any reason, you can't find someone your comfortable sharing things with, please continue to post here and communicate with me. I may not have the answers but I would be happy to act as a sounding board. Just don't give up. Joyce
  • acrossthepond
    acrossthepond Member Posts: 36
    Hi drbrunel,

    I hope things are ok with you. I know from your posting that you had alot going on and I hope all is well. I just wanted to let you know that you have support through this forum, if your day starts getting tough.
  • Clare84
    Clare84 Member Posts: 3
    Hi I totally understand a bit of what yr going through my boy is now three and a half he was also born early( 15 weeks) he had a bleed on his left and a small stroke along with hydrocethslus. he now has cp with a noticeable weakness to his left side along the way I have been terrified and still am because when my son was only seven months corrected he has to have a shunt inserted which is just like a little valve with a tube attached to it to drain fluid from his brain it is inside his brain and to look at him u would not notice it unless you felt it it's like a little bump in his head and feels like a straw under his skin running down his neck there is a slight scar on his head and one on his stomach at the time I was devastated but as time passes I have learnt to live wiv it he is like any other normal little boy I do still worry about if he falls on his head and if it ever blocks but I can only deal with that if it happens one day he will have to have it changed too but hopefully he will be slot older and understand himself I really hope this has helped a little lots of love and cuddles to your precious baby good luck in the future
  • drbrunel
    drbrunel Member Posts: 16 Connected
    Ok so its been a while so I though I would post an update on this topic....

    So....eight months ago, my wife had to have all of her small intestines removed due to a mid gut volvulus possibly caused by pregnancy and our angel of a son, Theo was born nearly 3 months premature but suffered a stroke and a grade 4 bi-ventricular blead

    Since I wrote this original post so much has changed...

    2 months ago my wife got pancreatitis and went into organ failure....She managed to pull through but as a result of her pancreatitis her intestinal reconstructive surgery as well as gall bladder removal was brought forward....This was 5 weeks ago...We dont know if it has worked yet...Excuse the way I describe this..My wife can now pass normally as she is in continuiity but she hasnt been able to eat yet due to extreme sickness...Doctors are saying this should "hopefully" pass but will take a long time....Still dont know what the future will hold for my darling wife who is only 29

    As for Theo, wow what a fighter...His Hydrocephalus again seems to have taken care of itself again and Great Ormond Straight decided against the insertion of a shunt...Yes his head curcumference was on the 99th centile and his fontanelle was raised, but he never showed any of the symptoms that would warrant a shunt. He is in for a routine follow up at GOSH on 2 nd Dec

    He is now just under 6 months corrected age and we are very happy with his progress. His head control is excellent, he is great on his tummy now lifting his head and turning freely, grasping at toys, very talkative with his baby talk, smiley and we started feeding him baby food some 6 weeks ago...Only slight stiffness on the right hand side trunk has been noted but it may be nothing and certainly something the physios can work on

    Still get precautionary physio every 2 weeks and seen by an OT...We are currently working on getting him to sit up which seems quite a lot for his age but the physio feels he is ready for it...

    I continue to pray everyday that we make it through this nightmare....

    Im not sure I could cope with issues with both my wife and boy, but at the very least I pray that at least one of them is "ok" if that is a way of describing it

    Also had some very tough news to take in with regards to the legal claim we are persuing..My lawyer has now recieved an independant medical review with regards to what happened to my wife and hence baby boy...Its a very hard read but in summary..There has been multiple and a catalogue of errors and negligence across multiple PCTs and as a result we have a very strong case. Our lawyer will be putting in a claim for multiples of millions for damages....When he told me this I broke down...I would have rather him said, there was no case, it was all a freak act of God, but instead he told us it could have all been prevented...

    So we get some money, cant see how this will help if my wife dies young and I have a disabled child...This is obviously the worse case but is what he is working with

    God I hate the world sometimes, but just trying to hold on to the few positives that we have

    Thanks for taking the time to read this
  • Elibarebum
    Elibarebum Member Posts: 11
    Thank you for the update, I often wonder about you, your family and the awful situation you have found yourself in.
    Your son sounds like he is doing brilliantly against all the odds, he sounds like a very special boy!
    I hope your wife comes through this also, you sound like a great tower of strength for them both.
    I'm sorry to hear about the PCT negligence, In an ideal world it shouldn't happen but it does and you and your wife were very unfortunate to have not just one but numerous mistakes made. I hope the case goes in your favour.
  • renacahill
    renacahill Member Posts: 145
    Thank you for updating
    It must be incredibly difficult for you knowing it was all avoidable and this pain you are all suffering could have been prevented. The news for your little boy is very good, and the stiffness on one side could ease off with time. The complications your wife had sound a very rare occurance, but something the experts should have picked up with appropriate testing. I just hope you are not feeling in any way that if you had done something differently things would be otherwise, you trusted other people to make the right decisions and they didnt. I think you need to look after yourself as well now, and not let the anger and bitterness overwhelm you. Grief goes though the stages you are going through, you need some counselling now, as does your wife. Most people say things look up around the 2 year mark but that is a long way off for you, do see your GP for talking therapies, you have been very strong so far but you need somewhere to offload and build yourselves up. In a way it would have been easier if it had all been a freak of nature instead of negligence, as lengthy court cases can be very wearing, but if it buys financial security it is a good goal to aim for.
    Best wishes
  • renacahill
    renacahill Member Posts: 145
    Hi there
    The guilt thing is such a common reaction, even though you know there was nothing you could have done. My daughter (who is Elibarebum!!! )(above) felt guilty for months and months because she was unable to predict she would have a placental abruption and little elliot would have some brain injury! It is crazy but it is so normal a reaction. It eases with time and once the immediate traumas settle - the first 2 years are definitely the worse. Your little boy with be OK I really feel that, his brain is busy working its way round the damaged areas, thats what baby brains do and its marvellous. PTSD is something my daughter also had, flashbacks etc, but she has mostly overcome that and is more her normal self every day. Even though you dont believe it (and I know you dont!) life with get back to a kind of normality - a different one - but wait and see, it will! Has your wife considered claiming DLA - for herself and your Theo? The financial help allows some leeway with working etc. Cerebra can help with claims. You are right to carry on working, sometimes the distance gives a sense of perspective and helps with coping. I hope your wife can find mums who've been through similar difficulties, perhaps via a hydrotherapy group? CP group? Just talking to others in the same boat is a great help, it is incredibly isolating having a special needs child or disabilities yourself, I hope she is getting support from others too . Its a very rocky road to start with, keep a scrapbook of Theos progress with photos of each stage, and on the dark days, there are always some, you can look back on his achievements and see the great strides he is making. It is always the gorgeous smiles that give us the strength to take the next step down that road!
  • drbrunel
    drbrunel Member Posts: 16 Connected
    Exactly my thoughts...To be honest I do feel guiltly myself...I always knew something was not right and no matter what doctors said I still thought something was wrong...The problem is they convinced both myself and my wife that everything was ok and some pregnancy pain is normal... Even after the operation, I went and bought the surgeon and