Struggling new mother, expected healthy baby, disabled baby

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Harrietttttt
Harrietttttt Community member Posts: 6 Connected
edited October 2021 in Families and carers
Hello,
My daughter is 6.5 months old and its been torture since day 1. I was expecting a healthy baby, the birth was complicated, she had very bad jitters, wouldn't/couldn't feed, I struggled to breastfeed for 11 weeks, she lost weight, I was pumping after every feed so my freezer was full and reluctantly topping up with formula. At 11 weeks I was told she probably had a severe milk allergy because she didnt stop crying and seemed in constant pain, she had horrendous reflux and barely opened her eyes for the first 2 months. 
Her development is very delayed, she has hip dysplasia, a small head, is floppy, cannot sit or feed herself, she has no vision, is stiff and jerky and she is still extremely unsettled. We have bought all the tummy time toys, motor skill toys and try constantly to get something back from her but she can't do anything. She cries all day ad if she is in pain and fights sleep. We are using an amino acid formula and thickener for 'milk allergy'/reflux and after many hospital admissions, an EEG, 2 cranial ultrasounds, blood tests, lumbar puncture and head MRI, we have found out her brain is abnormal. The pons and cerebellum are too small. She is now being screened for pontocerebellar hypoplasia and I am convinced it is type 2, she matches all of the symptoms. 
It's been the worst 6.5 months of my life, she hates sitting in any kind of seat or swing including the car seat so I have to constantly hold her and cant go anywhere. My beautiful baby girl who I always longed for is in pain. I'm really struggling to accept her and feel as though I can't go through with a life consisting of looking after a disabled child, it's been too hard already and will only get more difficult. I feel as though it is cruel to watch her suffer and not be able to do anything about it. Has anyone else ever felt like this? Has anyone ever been through something similar or had similar thoughts about feeling like you will be unable to love and accept your child because of a severe disability? I honestly feel like my life is over and I used to love my life. I am absolutely broken and heartbroken. It's even driving a wedge between me and my partner who has always been my best friend. I'm just distraught .
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  • Adrian_Scope
    Adrian_Scope Posts: 11,392 Online Community Programme Lead
    edited October 2021
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    Hi @Harrietttttt and a warm welcome to the community. 
    Firstly I want to echo what @Teddybear12 has said; you have shown incredible strength in reaching out when things are feeling so difficult. 
    I don't have experience of everything you're going through so won't do you a disservice by pretending I can relate, but two of my three children have had difficulties with sleeping and needed to be held at all times and it is beyond exhausting and that tiredness will be contributing to your feelings of not being able to cope. 

    Do you have much of a support network and is your health visitor still regularly involved? Have you spoken to them or your own doctor about your feelings? 

    You are not alone.
  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,649 Championing
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    Hi @Harrietttttt

    Welcome to the community and thank you for speaking so openly about what you are feeling and going through, as mentioned by the others above you have been very brave in talking about it. It must be hard to discuss and I just wanted to let you know that I really appreciate you telling us.

    It is quite normal and understandable to feel overwhelmed by this sort of thing, especially when it all seems to happen so quickly and with your child at such a young age. It's good that you have the support of your partner, even if there is some developing tension there, I think it just shows how much stress you are both under with everything that's going on which is totally understandable.

    Are there any other friends or family members who are supporting you both at the minute as you go through this? Have you spoken with them about how you feel and the strain this is putting on you? Furthermore, are you in regular contact with a GP or other health professional to get as much advice as possible throughout this time?

    You might find the below Scope services useful, and you can follow the links to find out further details:
    • Navigate - Navigate is a national mentoring service, that provides online emotional support for parents and carers of disabled children who are finding out about their child’s additional needs. Navigate is a programme of up to 6 sessions with a personal adviser, who will help you to talk about your feelings and concerns.
    • Parents Connect - Parents Connect is a 6-week support programme for parents and carers of young disabled people. The online sessions will be in groups of up to 12 parents or carers. There will be 6 parent sessions, usually one each week.

    Have you had any contact with your local social care team? You can view details here about getting a needs assessment through your local authority, and with your consent we could help you with making a referral for your family.

    I have sent you an email from community@scope.org.uk if you would rather communicate privately.
  • chiarieds
    chiarieds Community member Posts: 16,203 Championing
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    Hi @Harriettt - & welcome to the community. Thank you for joining & telling us about your little daughter. I'm so sorry that you've been through so much in such a short time, but hope what I suggest may help. Have you considered a baby carrier? A bit of research will be needed, but I've been doing a little for you. Altho called baby carriers, should you think this worth a try, & depending on what you might consider buying, some can be used up to age 3 or 4 (some depend on your child's weight).
    I used these with all 3 of my children, & felt they really helped......with your hands free, I found I could even hoover, but it also gives you a bit of a break from holding her as you're now doing. Being close to you may help her sleep, & it may help with her reflux, as it would keep her upright. You will also be able to get out of the house, perhaps for a walk, or to meet friends if they're nearby.
    Some considerations; if your daughter has poor head control due to her floppiness, you would need a carrier with head support for safety. Here's a little about some carriers: https://www.mumsnet.com/reviews/baby-carriers    which mentions a 'baby sling library,' which would be great to try, or try perhaps before buying.
    https://bestformums.co.uk/best-baby-carriers/    if you look at the 'Key Information' you will see some are International Hip Dysplasia Institute certified........more info from them here: https://hipdysplasia.org/baby-wearing
    P.S. your partner could wear one too to give you a break. :) Kindly let us all know how you're doing, whether you try this or not, & my best wishes.
  • Harrietttttt
    Harrietttttt Community member Posts: 6 Connected
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    Thank you all for your replies. There are some really useful links there which I will definitely look into. I have so much support, my friends and family are amazing but it doesn't change how heartbroken I feel. 
    I will definitely start looking into help that we can get from local authorities or charities.

    I guess I'm mostly struggling with my feelings and I think it would be beneficial to talk to someone who has been through something similar. One minute I want to make her as comfortable as possible and I'm staring at her feeling so much love for her but just so so sorry that I brought her into this world with the problems she has. I feel guilty. The next minute I just want to run away and start a new life because it's just been so so difficult. I'm being brutally honest and I am ashamed about how I feel. I hope this is just the start of a process of acceptance but I really feel like it would benefit me to talk with someone who has been through the same situation. If anyone can help and is willing to chat, please let me know.
  • Sandy_123
    Sandy_123 Scope Member Posts: 55,955 Championing
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    Hi @Harrietttttt welcome to the forum. Don't feel ashamed of how you feel, your doing a great job with your daughter.  it's great that you have support from freinds and family and also support here too. The links that Ross posted look like they may be good for you to read. Have you spoken to your dr about how you feel?  They may also be able to offer guidance also your daughters pediatrician may have information about going faward. 
    https://www.scope.org.uk/family-services/navigate/ 
    Please keep us updated.

  • chiarieds
    chiarieds Community member Posts: 16,203 Championing
    edited October 2021
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    I can associate in part, as, not knowing I had a genetic disorder, I brought 3 children into the world. Our eldest daughter had slight breathing problems for a few weeks; our youngest daughter had severe breathing problems at birth, & had to have a tracheotomy at 1 week old; our son suffered similar breathing problems during his first surgery for talipes. We lost our youngest daughter when she was 23 months old. I remember having being asked how did we cope as she needed care 24/7?; I don't know how we did, but we tried. Do I feel guilty, yes, all of the time, & would have wished it all different. A very kind person, whom I'd never met, sent me a lovely poem after we lost our little one. The message in it was about some children needing special parents to look after them...... that's you too.
  • Harrietttttt
    Harrietttttt Community member Posts: 6 Connected
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    @Sandy_123 I spoke to my Dr and HV a while ago and it actually just made everything worse so I am reluctant to go down that route again. I was having suicidal thoughts because I knew something wasn't right and everyone around me just kept telling me how perfect my daughter was and there was nothing wrong with her so it was making me feel like I was being overly negative and critical of her. Ontop of this, she doesn't stop crying, and I dont mean whimpers, I mean screaming and throwing her head back, flailing her arms around, sweating, distraught crying which has been so so hard to deal with 24/7 as I'm currently on maternity leave so the main carer. I was constantly getting fobbed off by health professionals. Everyone was perceiving me as a paranoid new Mum. I would never harm my daughter but I was perceived as being unstable and the HV reported me to child services rather than offering me help. So definitely not going down that route again.

    @chiarieds I'm really sorry for your loss and thanks for sharing that with me.  Our little one had breathing problems at birth too and the part of her brain that isnt fully formed can affect breathing so she needs to see a consultant about that. I'm constantly watching her chest move to check she is still breathing. The condition she is being screened for suggests she will never see, sit up, walk, talk, and will have severe learning disabilities. I just know the world isnt going to be kind to her. I didnt know it  was possible to feel this sad. 
  • MaisieBoohoo
    MaisieBoohoo Community member Posts: 32 Connected
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    Oh you poor, poor woman, I wanted to say angel, as you must be to have coped so long in such horrific circumstances, esp being robbed off by health professional. That stress of having a new baby that screams constantly and can’t be put down must push you to the limit. I suspect you are severely sleep deprived too. I am not a mother but as a fellow human I feel your intense pain.
    I wish I could just do something or say something that would help but I am not that wise.but please do not harm yourself….the world so needs people like you and only advice I would give is, use this forum (as you do not want to see anyone due to what’s happened) many folks on here will be able to understand far more than i and I am sure shared many of your feelings.

    take care of yourself and your beautiful daughter
    lots of love across the wifi to you both xxx

  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,649 Championing
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    Hi @Harrietttttt

    Thank you for responding, I echo the words of other members that you are doing fantastically. Sometimes it can take a while to adapt in a situation like this one, but I'm sure that once you receive some support and advice you will feel much better about everything. 

    I hope the replies from other members have been helpful, and please do utilise the links provided because I'm sure they will be helpful for you. In addition to Navigate and Parents Connect, Scope also have a helpline service that you can call and talk things through, if that would be easier.

    I am sorry to hear that speaking with your GP didn't help you as hoped, and that it made things worse, you could consider seeking a referral to a new GP if you weren't happy with how the previous one handled the situation?

    It's concerning to read that you experienced suicidal thoughts, and thank you for telling us about that. Was that just a one-off occasion or have you felt suicidal at all since then? I have sent you a further email from community@scope.org.uk with some resources that you could consider accessing if you ever need support for your mental health.
  • Sandy_123
    Sandy_123 Scope Member Posts: 55,955 Championing
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    Hi @Harrietttttt thank you for responding, I'm sorry to read that professionals have let you down. I can understand you not wanting to approach them again. As Ross has mentioned maybe changing drs might be worth doing. Please ring the helplines listed above as you may get relief from talking to some body. If you feel your baby is not settling or in lots of stress you can call 111 for advise and visit a&e.
    Also your health visitor should be supporting you and baby not making things worse maybe you could change health visitors.  
  • cc20204
    cc20204 Community member Posts: 3 Listener
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    Hi @Harrietttttt I see you posted this a while ago but just wanted to reach out as I am feeling almost identical to how you were feeling when you wrote it and am going through a very similar thing with my baby girl. Not sure if you will see this message but just wanted to say, I hope you are doing ok. It is SO hard, I couldn’t imagine anything more difficult to be honest. I’m feeling very lonely and sad with it all just now. It’s so unfair but there is some comfort in sharing experiences and feelings at least. 
  • Harrietttttt
    Harrietttttt Community member Posts: 6 Connected
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    Hi @cc20204 I'm really sorry to hear you are going through something similar. How old is your little one? 
    I'm almost 2 years on now and things are better. My daughters distress and pain started to ease after she turned 1 which made life so much less stressful. She is still developmentally still 3 months old but she's growing really well. We are now looking at home adaptations so that she can have a downstairs bedroom and wet room. Emotionally I'm much better.. I found am amazing therapist who really really helped me, she taught me how to accept my thoughts and feelings rather than fight them and that they were ok and I wasnt a bad person for feeling the way I did. She also made me realise what my coping mechanisms were (going to work, seeing friends, working out, me time). So I would definitely advise getting a therapist (and shopping around for the right fit). I started taking antidepressants and am just starting the process of trying to slowly wean off them. Maybe speak to your doctor as I'm sure they did help me. Regarding accepting my little one.. it's better. I still wish she was healthy but I do accept that she isn't and she still needs love and care and me and her Dad are the best people to give her those things ... it's a selfless, largely non rewarding job being a mum to a severely disabled child because you really dont get much back from them but I have learnt to adapt and you will too if you want to and if you give it time. My breastfeeding journey still traumatised me.. I actually blame it for our lack of bond because I really resented my little one in the early days for not being able to do it as I tried so hard so just dont put yourself through it if it's not working for you. So 2 years on... she has made me a better person, theres no doubt about that - I'm more resilient, more compassionate, stronger. I have learnt that taking care of her would take over my life and make me really sad if I let it (constant phone calls, 6 consultants, multiple therapists, appointments) so I decline the appts we dont need that I dont think benefit her and we have a rota for appts between myself, my mum and her Dad. I dont answer phone calls during the day if I'm busy.. I let them go to voicemail and reply when I can and request that people text rather than phone as it's more manageable. I still work full time and have just been promoted, I put her into a private nursery who are wonderful with her. In the early days of nursery she would vry all day but she did the same with me so it made no difference and things were so bad that I just had to prioritise my own mental health. I wanted to run away so much in the early days, it just wasnt a life I wanted but I'm glad I persevered, having a really strong support network helped. But even going through those emotions has helped me in being non judgemental of parents who are unable to look after their children because I was so close to just getting a flight to anywhere and not looking back. I really hope this message helps you. It will get better if you hang in there but it will take time and lots of work. Big hugs xxx
  • Biblioklept
    Biblioklept Community member Posts: 5,022 Championing
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    cc20204 said:
    Hi @Harrietttttt I see you posted this a while ago but just wanted to reach out as I am feeling almost identical to how you were feeling when you wrote it and am going through a very similar thing with my baby girl. Not sure if you will see this message but just wanted to say, I hope you are doing ok. It is SO hard, I couldn’t imagine anything more difficult to be honest. I’m feeling very lonely and sad with it all just now. It’s so unfair but there is some comfort in sharing experiences and feelings at least. 
    I haven't experienced this but I just wanted to send you some love <3<3<3 I wish I had some words of wisdom or comfort but I don't. Please know it's okay to take time for yourself and we are all here if you want or need to vent or talk <3
  • Jimm_Scope
    Jimm_Scope Posts: 3,712 Championing
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    cc20204 I personally cannot begin to understand the difficulties you are going through, I am glad however you've managed to find someone who went through exactly what you are experiencing. I think it's important to know that you are not alone, and you can see someone has  gone through what you are right now and has come out the other side. It takes a lot to reach out for support like you and Harrietttt have done it takes a lot of strength to admit you are struggling, that is something I do understand at least.

    And again, you are not alone.

    Do you have any support in looking after your baby girl? Also, have you spoken with your GP about how you are doing?

    Scope does have a programme, Navigate, for parents of disabled children: Navigate: emotional support for parents | Disability charity Scope UK

    We also have an advice section for parents: Advice and support | Disability charity Scope UK

    I'd like to bring particular attention to the advice page on your own mental health: Managing mental health | Disability charity Scope UK

    As  I am sure Harrietttttt can attest to, your own mental health is vital. Please do keep in touch with us here, if you can answer the questions I had above that would be great. If you're rather not talk publicly here about it you can always email us community@scope.org.uk

    Stay safe, we're here if you need us.
  • CherSaysHello
    CherSaysHello Community member Posts: 36 Contributor
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    My heart goes out to you both, and it’s great things are more positive for you now @Harrietttttt I think the steps you took to protect your own well-being, and in turn your lovely baby’s were spot on. I hope you've gleaned some hope reading @cc20204

    I felt a certain amount of shame about my own struggle to adapt to motherhood too. It’s an overwhelming life change, and with additional needs of little ones, could feel utterly engulfing I imagine. Just know you aren’t in this alone. What helped me was: talking to those I trusted, staying away from social media and unrealistic projections of motherhood(!) and knowing that I was doing my best. That’s all we can do. Take care of yourself ❤️
  • Harrietttttt
    Harrietttttt Community member Posts: 6 Connected
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    Completely agree with staying away from social media @CherSaysHello I deactivated my accounts for a long time.. On that note I had to let go of trying to be a perfect mother- my reusable nappies and wipes never got used, I gave her a dummy (always said I wouldn't),bottle/formula fed, hardly made any purees from scratch in the early days and actually being an average mother made me a lot happier and in turn made my daughter and my whole family a lot happier xx  
  • CherSaysHello
    CherSaysHello Community member Posts: 36 Contributor
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    @Harrietttttt I hear you! Also use a dummy here after saying I never would, formula fed, used food pouches and disposable nappies. Happy mum = happy baby I agree. Block out the external noise and do what works for your family. 
  • cc20204
    cc20204 Community member Posts: 3 Listener
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    Hi everyone, thanks so much for all your messages of support. I wasn’t even sure if anyone would see my post! 
     @Harrietttttt I can echo SO many of your views and values. My little girl is 16 months old (14 months corrected, as she was born 2 months premature) is and also developmentally around the age of 2-3 months old still. On the whole I feel there’s been an improvement in how I’m feeling about everything however when I wrote my previous post I was in a dark place. These sad and angry spells are still occurring and hitting hard, albeit less frequently than they were back in the very early days. We have had a turbulent journey with prematurity, uncontrollable seizures, gastro issues, breathing and secretion difficulties, fractured femur, chest and urine infections to name a few of her medical issues. We have had some good spells in between which have been really special. And the achievements that she does make feel HUGE. I’m so proud of her and how she copes and gets on with everything. It’s so inspiring and often is the reason I’m able to stay strong I think! She is tiny but mighty. Although the feeling of unfairness and grief I don’t think will ever go away for me. She is completely innocent in all of this and has had to go through so much in her wee life. We don’t know what lies ahead and it scares me to think of her suffering in any way. So trying to live day to day as best I can. I am on some medication to help with ruminating thoughts and have started seeing a psychologist; both have been helpful. I’ve also got a lot from returning to work and am motivated to progress with my career as and when I’m able. Really pleased you’ve managed to achieve some sense of stability in your life. I hope we will be able to have this one day! Thanks for sharing and instilling some hope. 
    @Jimm_Scope thanks for the links I will check these out. Our team is great and we have also started receiving support from our local hospice which, although difficult to accept initially, has proved to be invaluable. 
  • Harrietttttt
    Harrietttttt Community member Posts: 6 Connected
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    There are definitely still major ups and downs for us but more stability. Post traumatic stress is very real but so it post traumatic growth. We've got this xx
  • cc20204
    cc20204 Community member Posts: 3 Listener
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    @Harrietttttt 🙌 we do! 
    Thanks for the virtual chat 🥹 Here if you ever need to talk, vent or whatever.