Wish I could have some answers. Struggling — Scope | Disability forum
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Wish I could have some answers. Struggling

HarryCSMum Member Posts: 6 Listener
where to start... My gorgeous boy is  12 months old at the end of this month. Things have never been straight forward when he was born he was admitted to neonatal as wouldn’t feed and his blood sugars had dropped very low. I noticed his hands were doing a weird jerky shaky thing. Subsequently he was jaundice and had phototherapy. At 2 weeks d he was admitted with a chest infection at 8 weeks old after weeks of screaming he was diagnosed with a dairy allergy. Then at 4 months he saw a physio for slight flattening of head and he was referred to a neurologist as he still couldn’t hold his head up. We weren’t seen until he was 9 months old and the neurologist said wait unil june and see what progress he makes as he was then holding his head up and had just started sitting. Harry still cannot bear any weight on his arms, can only roll if his arms are placed in the right place otherwise he gets stuck.  He is not mobile in any other way and when sitting he gets tired and has a hunched back. It is only a gross motor delay he seems to have. 

A month ago ago he was admitted to hospital with a chest infection... his 4th so far and is also under a respiratory consultant as he has a permanent cough and , is sick most days. She alluded that the cause may be down to his low tone in his upper body but that it wasn’t her area and see what neurologist says. Harry doesn’t eat any solids either and pushes it out with his tongue. He has lost weight and is below all centile lines.  He seems to have hyper mobile ankles and the physio is fitting him with boots.

I am just at a loss with it all, why is this happening, what is wrong with him, and what did I do wrong to make this happen? I’m struggling with the fact that nobody wants to give a straight answer they have just mentioned starting tests in June. I know it’s not long to wait but I just want to know and I also wish I could change it all and fix everything for him :(. Really struggling . Will he ever walk ? I know it’s early days but as his mum I know something isn’t right and I have done since he was about 4 months old but the doctors haven’t been listening.

sorry that was one long rant.


  • Geoark
    Geoark Member, Scope Volunteer Posts: 1,388 Disability Gamechanger
    Hello @HarryCSMum and welcome to the community.

    I can appreciate your concerns, we argued that something was not right with our daughter for 6 years before someone else caught on that something might not  be right.

    Children develop at different speeds and the short delay will help to give them a better picture of what is going on and how far behind your son is in his development progress. While it is understandable for you to want a diagnosis of what is wrong with your son getting the right diagnosis is important.

    While the neurologist said to leave it until June have you spoken to your doctor about bringing this forward? It might also help if you keep a diary of the various issues, the main ones like the ones you have share here and any smaller ones.

    The main reason for my post however is to address one small part of your post. It is not unusual to want to have something to blame or explain why these things happen often there is no one to blame or could have been done differently.

    Unless you were abusing your body with drugs, alchohol or extremely poor diet then it is unlikely that you are responsible for what is going on. So please stop blaming yourslef. Babies and children grow so quickly, my daughter is 25, yet the memories I have of her birth and childhood seem like yesterday most of the time. So while easier said than done please take the time to relax and enjoy your child in the now.

    Please let us know how things go, and feel free to rant here when ever you need to.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • JennysDad
    JennysDad Member Posts: 2,299 Disability Gamechanger
    Hello @HarryCSMum and a warm welcome to the community. I'm only here right now to back up @Geoark's observations.
    I've never myself met a mum of a disabled or seriously poorly child who did not seek to find ways to blame herself for what had happened. But life isn't like that. This is not your fault.
    Warmest best wishes,
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,673 Disability Gamechanger
    Im sorry youre having such a tough time :(
    Senior online community officer
  • JennysDad
    JennysDad Member Posts: 2,299 Disability Gamechanger
    Hello again @HarryCSMum.
    I should perhaps have mentioned that my own first wife, the mother of our daughter Jennifer, agonized over what she might have done 'wrong'. The truth is that she did everything she could. Bad things happen, Harry's Mum to very good people.
    Like Geoark above I have some idea of what you're going through. Jenny at birth was pronounced 'small but perfect', yet within a few days her systems crashed and left her heroically disabled. We had no idea at the time what the problem was or how she would be affected, we worried desperately about what she would and would not be able to do and feared constantly for the future. Disabled? Brain damaged? What on earth did these things mean, and what would they mean for her and us?
    It was an awful, horrible time, and I get the sense that you are going through that, If it would help at all to chat, just make sure you put '@JennysDad in your post to ensure that I see it.
    Very warmest best wishes to you,
  • HarryCSMum
    HarryCSMum Member Posts: 6 Listener
    Thank you everyone. I feel awful, we don’t have a diagnosis but I think he has mild cerebral palsy caused from his blood sugars crashing in his first day of life.  He fits most of the signs. I feel so responsible. After he was born I hadn’t slept for three days and asked them to take him off me as I was falling asleep and didn’t want to drop him. I should have fed him. Hours later I couldn’t get him to feed a midwife managed to give him a couple of drips of colostrum from a syringe although I’m not really convinced he got any of it, he never cried for food. Hours later I tried and I asked for help but he fell asleep. Again I asked for help hours later and they just kept saying to express and use a syringe which I couldn’t seem to do and nothing happened until he started making weird jerky arm movements. They then checked his blood sugars and  literally picked him up and ran to neonatal. I feel awful I shouldn’t have slept I should have tried to feed him straight away and when he didn’t I should have given him a bottle. I feel awful that it could be the cause and I could have prevented it. I don’t know how I will ever forgive myself, his life could have been so much easier and because of me it’s not! I know it’s still early days but I wonder if he will walk and be able to join in with sports at school or whether he will bullied :( the future is so uncertain :(
  • JennysDad
    JennysDad Member Posts: 2,299 Disability Gamechanger
    Hello Harry's mum @HarryCSMum and thank you for responding. Your post seems to rather prove my point :smile:
    It is not your fault, though I doubt you will yet be able to believe that.
    First, you cannot prove such a case against yourself. There are too many variables. To what extent were nursing staff responsible, for instance? And was everything actually as it should have been when Harry was born? The fact of his not seeking food could easily suggest that there was something wrong at birth.
    My daughter was like that. Her mother's milk failed, as it happened, and I think Jenny was given glucose and water or something like that. Did she feed, did she take what the nursing staff gave her? We did not, could not know. Nor, perhaps can you know that of Harry.

    The consultant - an astonishingly handsome man who had all the ladies wanting his services - told us repeatedly that Jenny would be small but perfect. One man, a registrar, told us he was anxious and wanted to run tests. That upset my then wife and she complained to the consultant. He, convinced that he was correct, tore a strip off the registrar, cancelled the tests, and Jenny was born, ostensibly 'small but perfect'. Only she wasn't.

    I saw my son born some four years later and if I had seen them in reverse order I would have known. My son looked as if he could have stood up without assistance and hefted miniature barbells. We had reason to believe, subsequently, that some of the crucial numbers were fudged.

    And there's an issue you hit that most people know nothing of. If a consultant has said a child is 'fine', junior doctors and nurses are not usually going to disagree.
    A friend of mine had a baby son who projectile-vomited at the drop of a hat and to such an extent that they covered every surface in their living room with sheet plastic. Admitted to hospital the consultant said he could find nothing wrong and surprisingly (a touch of sarcasm, forgive me) the nurses reported no projectile vomiting whilst he was in their care.

    Evidence later emerged that they saw it, repeatedly, but did not report it. The consultant would not have appreciated their doing so. So my friend found himself making his son a ward of court in order to prevent him from being taken into care because the consultant had decided that the baby was failing to thrive BECAUSE of his mother. Only afterwards was the child treated for a pyloric stenosis and CP diagnosed.

    And I have known my own daughter admitted to hospital for 'observation'. I don't clearly recollect the numbers, now, but I think she could 'fit' up to 30 or 40 times a minute. Curiously, the only time she did not fit at such a high rate was when we took a break to get a drink or something to eat!

    At a time when newborns were being discharged within 24 hours, Jenny was kept in for four days because forceps had been used in the delivery. Despite all that time for observation, Jenny's systems visibly crashed on the 7th day of her life, and it took us years to discover that the problems she manifested had existed since - and almost certainly before - her birth. Indeed, between her homecoming on the 4th day and her systemic failure on the 7th, Jenny had been twice visited by a midwife and a midwifery student. On the 6th day they became alarmed at what appeared to be a dramatic loss of weight and rushed... to their car, to fetch the student's weighing scales. Not reliable, these things, we were told. And according to the student's scales the drop was less dramatic, so that was the weight they determined to be the correct one.

    Our medical services and staff do, overall, a fantastic, wonderful, even heroic job, but they do from time to time get things wrong.

    So much more I could tell you, but the essential truth is that it is highly unlikely that any blame could attach to you for what Harry has gone through. And if, somehow, it could be proved to do so, it would be absolutely and totally pointless.

    You are having a hard time and may have a harder time in front of you. What has happened to you is 'life', a combination of nature and accident, for which you cannot be responsible.

    I so wish I could be there with you, Harry's mum, to give you and your partner a hug and seek to reassure you. Things will get better, somehow they usually seem to, so don't slow that down by apportioning guilt to yourself that you just do not deserve.
    Affection and warmest best wishes,
  • mossycow
    mossycow Member Posts: 485 Pioneering
    It is extremely clear from every letter you've typed in all your posts that you have devoted your love and life to looking after your son.

    You've made the BEST choices available to you, got as much medical care as possible and frankly been super human during the last unbelievablly hard year. 

    I hope you don't mind me giving you my gut feelings. I write them with kindness and while also wishing we could take it all away... But my gut feelings are this. 

    Harry could have been born 'avetgae/normal etc'... And you'd still be worried sick. He could have been born 'average' then had an accident age 5....or an illness at age 12....etc etc.the constant stress of not know if your kid will be OK tomorrow is almost crippling I feel, and you have a harder dose of it as he's had a hard start. 

    Also. You do not have the time, energy or any cause to feel guilty. You'll need all that energy for Harry! I bet you're knackered! 

    It's June now.... Have you had any progress? 

    So glad you're on here. Do do do get as much support as you can xx

    Also... Is he absolutely edible and gorgeous? 
  • HarryCSMum
    HarryCSMum Member Posts: 6 Listener
    Thank you everyone it’s so lovely to have support. He is a perfect little boy in so many ways, he is always smiling even when he is in hospital on oxygen for chest infections, bless him! We see the neurologist this Thursday so will see what they say! I would love to get some answers but fear that it may be more waiting for more tests. In many ways I look forward to a diagnosis so that I can try and come to terms with it but equally I know no matter how much I try to prepare myself to officially hear there is something wrong is impossible to prepare for. 

    Its hard as both my Husband and I work full time in professional careers, and I feel harry deserves more of our time. I need to talk to my employer I think! 

    Thank you you again for the support, I will update you on Thursday.

  • mossycow
    mossycow Member Posts: 485 Pioneering
    Yeah, might be good to chat with employer... Gosh, such a hard time for you guys. The waiting.... Awful.

    I won't pretend to know a smidgeon of what you're up against, but... Hmmm you might not get a clear diagnosis. But you definitely WILL get a plan of how best to care for your wee gorgeous boy. 

    Really hope you start getting some progress on Thursday. I know we hear hard stuff about NHS but, I truly believe you are in some of the best medical hands of the world. Sounds like he has some pretty awesome parents too... 

  • HarryCSMum
    HarryCSMum Member Posts: 6 Listener
    So today we have been referred to see a neurologist in Bristol and start genetic testing and mri etc. They think possible CP but she said she actually thinks he may have a thing called FSHD which is a rare form of muscular dystrophy and is even more rare in babies. We won’t know for sure until all the testing is done. The horrible thing is I can find nothing anywhere about other people’s experience of this with babies and I don’t know what to expect. Everything just says that when it is first onset in an infant it is normally much more severe. So then I have so many questions about what Harry’s future may hold. Feeling gutted.
  • Zeezee
    Zeezee Member Posts: 78 Pioneering
    Hi Harrycsmum, I remember your pain like it was yesterday. In fact it was only a couple of years ago as my little warrior is just turned 4. From what I can see from your posts you have pushed for tests/answers very early on. It also sounds like you don't take no for an answer where your little boy is concerned. And that is brilliant and admirable as it would be easier for some to not know, but you seem like the kind of mum who would rather find out despite how painful the answers are so you can work on what is the best course of action and get the best support and professional help for your son. I doubt very very much that you having some much needed sleep when he was first born would have done anything other than give you a better chance of producing any milk. I nearly killed myself when my daughter was born trying to stay awake taking two hours hand expressing 0.3mls, every 3 hours, until I did collapse and was ordered by the midwife and banned from NICU until I had a full night sleep as I was damaging myself and depriving my 9wk prem baby of much needed milk as I was trying too hard. And oh how I tortured myself with guilt that it was my fault that I was not strong enough (after nearly dying during the c-section because of maternal sepsis) and I should have been able to make enough milk. My body was not expecting or ready to give birth at 31 weeks, I didn't have the milk. I had just nearly died (they told me to get my next of kin down as they did not expect both of us to make it out of surgery). But I still blamed myself, if I had done this/changed that anything and everything I could put on my shoulders I did. And to be honest I still do sometimes. From what I can tell you sound like an amazing mum who is following your gut instinct and fighting to get what your son needs and I know its hard but you are doing all you can so try to relax and enjoy your son as these early years are so fleeting and precious. You know yourself that he is going to have issues as he grows you may not know how big or small these issues will be but you will be supporting him regardless so enjoy the precious baby times you have in-between working and hospital/therapy appointments. Let us know how everything goes and stop being so hard on yourself you don't deserve it. Take care hun xx


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