Unable for future with down syndrome child

[Trauma21]

Baby was born unexpectidly with down syndrome. And its caused severe trauma to mee since.

I never wanted to take on this journey but felt pressure from her dad and family and friends who knew i had her.

Her dad left me and takes her at the weekends, full time care has been left to me. I have been suicidal since her birth. I am unable for the journey ahead, my placenta failed aswell so lack of oxygen has probably made down syndrome severe.

Every time i think of my future all i want is a rope, and noone is helping me, all doctors and mental health teams say its normal.

Now ive bonded with this baby and i love her but she wont always stay that way and the thought of her future and mine definitely has me suicidal.

My family said im digusting and will be disowned if i give her over to her dad.

He says he will take on full time care but then refuses to leave work and wants to leave her with his elderly parents. Making me more guilty.

Judge if you want but not everyone is able for this journey. I am going to sue my doctors, i feel like they should all be in prison. They took my life from me . I should have had a choice. My life feels like damned if i do damned if i dont. Death seems easier both ways.

This shouldnt have happened me. Plus i dont want this life for my daughter. As i said they let my placenta fail due to negligence and the lack of oxygen in my eyes means her future will be bad. I feel very guilty for bringing life like this in the world. Feel like i ruined so many lives. But i deserved better care, its 2023 not 1923. This shouldnt have happened

I can feel your pain OP I have been through similar. my daughter was born with a rare genetic disorder diagnosed at 3 weeks old. She became very ill after birth and the doctors ignored all her symptoms and as a result she has brain damage. I will be her carer for life.
My daughter is 10 now and I managed to get through the worst of it. When she was in hospital as a baby I often thought of leaving her there which makes me feel awful now but at the time I was so lost and so scared.
I don't know what the answer is for you, but I just wanted you to know that you're not alone xx

Have you considered shared care with your partner? It sounds like you are terrified of the future which is understandable. You also sound depressed. Have you seen your gp about anti depressants? These can make a big difference.

Oh OP, what an awful situation for you.

You are understandably grieving for the baby and life you thought you’d have and that’s okay.

What is it that you want to Sue the doctors for? That the Down’s Syndrome was missed and you wouldn’t have continued with the pregnancy if you’d known?

If the father is willing to take in full-time care then let him. Even if it’s just a temporary measure whilst you come to terms with your own feelings and get yourself in a much better place
emotionally.

This must have been a huge shock to you and there is no right way to react, all you can do is what feels right for you at this point in time.

Hi there Trauma21,
As these lovely women have said, we are here to offer support to you and we are really sorry to hear you are feeling this way.

We hope you don't mind, but when these threads are flagged up to us we usually add a link to our Mental Health resources.

You can also go to the Samaritans website, or email them on [email protected]. Support from other Mumsnetters is great and we really hope you will be able to take some comfort from your fellow posters, but as other MNers will tell you, it's really a good idea to seek RL help and support as well.

We also like to remind everyone that, although we're awed daily by the astonishing support our members give each other through life's trickier twists and turns, we'd always caution anyone never to give more of themselves to another poster, emotionally or financially, than they can afford to spare.

You have posted in Parenting, Trauma21, which is fine of course, but we also have a specialist board for parents of children with special needs that might be able to assist you, or tell you how they have dealt with similar issues.

We do care, and we do want you to feel supported. Welcome. x

Thanks for the replies everyone.

I am going to sue them firstly because of previous miscarriages and health conditions i should have been high risk pregnancy with better monitoring.

There were signs of down syndrome that were missed. I was with them for a week and nearly died of hypermesis which was told repeatidly wasnt normal and the worst case they ever seen. They failed to do any checks up during this week only anti nausea and heart tracings from low potassium.

Never got my follow up appointment from being discharged.

Never gave another appointment i was due at 30 weeks me and my doctor were trying to contact them.

Was sent away from emergency room at 31 weeks even though baby was less than 1 percent severe iugr. I was scanned and sent away by her.

At 32 weeks i was told placenta was failing it wasnt chromosonal i had to bring that up myself because a google search said it could be. I begged them to take her out due to hypoxia which i was seeing from google. They wouldnt. I was in hospital for 12 days crying and begging them to save her from damage . They said no they were giving her a chance to grow. In the end they let her get nearly 5 weeks behind so they made her worse in the 12 days i was in hospital they said a mothers intution was always right and gave me an emergency c section in which she had down syndrome.

The placenta results had 7 diagnosises on it. All seem to be rare and really frightening.

If my pregnancy was monitored correctly they would have known she had down syndrome or at the very least be aware my placenta was failing so badly and baby wasnt doing well.

So i requested my medical files and am getting a solicitor to look into it.

I am going to sue for medical negligence of pregnancy, the placenta failing the failure of diagnosis and physcological trauma.

Even though i love this baby . I am scared of what the future holds. And i should have been given proper healthcare. My life mattered aswell. And if shes extremely bad it could be in pieces. This has already destroyed me. I am not mentally emotionally or spirtually able to go through any more in this life.

If i give her up it will kill me, if i dont it could kill me. The way i view it is in this day in age a situation like this shouldnt have happened.

Dad and his family have been great to child. But absolutely horrendous to me

Good luck with whatever you decide to do with your child. Lol after yourself.

Sorry you are finding this so hard OP. Have you been in touch with the Down's Syndrome Association? They may be able to give you support and advice as well as putting you in touch with people in a similar situation.

Some resources that might be helpful to you:

• Down's Syndrome Association

• Positive about Down's Syndrome Facebook group (this has lots of parents whose children have Down's Syndrome which might be a great source of support)

• @dontbesorry2 Instagram page written by a lady whose son was unexpectedly born with Down's Syndrome. I think she is taking her page down soon now her children are older but she also wrote two books "For the Love of Oscar" and "Don't be Sorry" which talk through her experiences of raising her son. I know she wrote about the shock and grief she felt after he was born but her son has achieved many amazing things.

It might also be helpful for you to find out some local groups for parents whose children have Down's Syndrome.

I'm so sorry your family aren't being more supportive.

I didn’t want to read and not post, I’m sorry you don’t have any support from your family. There’s been lots of good advice on here, it’s still such early days for you both and I can’t even imagine how you’re feeling. It sounds very tough.

Please take care of yourself first, there’s no shame in that, do what you need to do to get yourself well. Speak to Samaritans if it gets too much again. I’ve called them myself a few times and found them very helpful.

even though its very hard right now, it won’t always be like this. Take each day as it comes and get the support you need. Take care 💐

I'm so very sorry.

What stands out to me is how horribly you have been let down by your family, your ex partner, and his family.

I also echo a pp in saying that 17 weeks is nothing. You are still in the trenches. I was still reeling from labour, birth, lack of sleep at 17 weeks. It hit me like a tonne of bricks and I didn't have the additional issues you are facing.

Please be kind to yourself for now and let tomorrow take care of tomorrow.

X

You may be eligible for the perinatal mental health team OP as your baby is under 1 year. They are specialists and can help with bonding, medication etc and have helped lots of mums and babies. Your GP would be able to refer. Please tell them how low you are and get help, things will get better.

I’m so sorry you are going through this. Am I right in thinking that you have good reason to fear that she might have cerebral palsy, caused by lack of oxygen, on top of Downs Syndrome?

Suing the hospital may result in compensation that will enable your ex to take her for 5/7 nights, and to pay for private care for her so that his own parents don’t end up taking on the lion’s share of her care.

You don’t have to do this alone, but you do have to shout from the rooftops that you can’t do this alone; that you are suicidal and that you need help.

Suing is not a,quick fix . Could take years. Tho speak to some specialist solicitors for advice

But Seek some support to decide the here and now.
Who takes care of baby now and next months.
Handing over to baby s dad is fine.
Who is taking care of you. Seek support.

https://www.waldrons.co.uk/insights/how-long-do-medical-negligence-claims-take/

I really hope you see this. We had our little lady with DS in 2015. Yes it was a shock. But so what we move. BUT she is amazing, best thing to do is take every day as it comes. Your bond will be un breakable. You have a friend for life who will stand by you through everything. Trust me! Genuinely if you want to message me please do!Don’t worry about the future you are now and not there yet, we are here and now and she’s no different today than she was yesterday x best wishes

And also so what she won’t be able to do everything but I tell you what I’d rather a tag team partner with a heart of gold than 99% of other people on this planet
she will love you like no other and you her!

Sounds like you have a severe lack of support.

I think it’s important to acknowledge your feelings are valid 💐please don’t feel judged. I hope you manage to take some good advice from here and obtain some assistance and help.

Your family sound very unsupportive! Shared custody is absolutely fine, you don’t have to do it all.

See your G.P and absolutely make a fuss, get the help you need.

Forgot to add to my message Down syndrome support are very good I really hope you get the help you need, I’ve seen other people on here have listed groups for you looking back at the thread.

I agree. You poor thing, you do sound utterly traumatised-I don’t think anyone can judge ANY of the feelings you have, and no matter how much support you manage to get -it’s probably never going to be enough. You don’t have to do this journey

Do talk to Samaritains.
If your DD would be better off with her dad then it is being a good mum to let her go to him. You do not owe your family compliance, you do not need their approval. You do need to put the best interests of your child first but that does not mean you have to be more than you are caable of. It is true that some parents of SEN kids find superhuman levels of strength and resilience to cope with the onslaught but that isn't granted to everyone and you are not obliged to be perfect. You love your daughter and that is important. It is not unloving to admit that you can't cope. She may be happier living elsewhere with a mum who loves her and can see her occasionally but doesn't provide day-to-day care, and that mum being mentally healthy and able to cope, compared to living with a mum who can't cope and has poor mental health and isn't therefore able to create a suitable home environment.

At 17 weeks no one would be over the shock you have had, even more so when their partner had left them and you had a difficult delivery too. As pp have said, you need to focus on your MH. I do think if you are not coping then get your ex to do more than weekends.
My brother has a severe disability (not Downs) and life is different, but this is not forever. My brother lives in a supported living home and some of the residents have Downs. Of course he's an adult, but (as with any child), you can expect them to leave home, although of course it's a lot to take on and things won't be the same.
All the best, xx

So sorry to hear how you are feeling, and glad you are reaching out so you aren’t carrying these feelings inside.
To maybe help give a little perspective my auntie (now in her 40s) has Down’s syndrome, obviously there are varying degrees. Some can work some can’t. My auntie is one who is unable to work due to her DS. My grandma cared for her as a child however when she reached school age, she went to school with other children who had learning disabilities, after that she continued on with education and fun days at similar places, there is a lot of help out there but unfortunately it tends to be when they get older nearer to school age, but just so you know it won’t always be just on you, support will come. As she got older she continued to go on trips, and days out with other adults who had learning difficulties, she wasn’t forgotten about or left with my grandma all day everyday. As she got older she had things she liked to do, watch certain tv programmes etc so she would do these whilst at my grandmas and other family members would visit. When my grandma got older she went into shared housing with other adults and 24 hr carers. Then finally got her own place where she has 24 hour carers, and she is happy living in her own space. I must say she is one of the most positive people to be around, she is always happy and makes my worries feel small. She lost an eye due to an infection and she has adapted and dealt with it like a trooper, could definitely put a lot of people to shame! She may have missed out on a relationship and children but the mass amount of family time, days out, friends made, trips she has gone on has been an amazing amount so far xx I do hope you get the help you need to cope and hope sharing her story gives you an insight into how the future may look xx

So sorry OP, you can hear how low you are in the posts. Please speak to someone in real life about your feelings. Ask father to take her temporarily while you sort out your mental health, she is his responsibility too.

My daughter had a prenatal diagnosis of Down syndrome. Although we had time to process it before she was born it was still a struggle. Positive About Down Syndrome is a fantastic group to join. It’s so supportive and Wouldn’t Change A Thing is great too.
Our daughter is now 2 and I wouldn’t change her for the world. She amazes us everyday.
Be kind to yourself, it’s a difficult thing to process.

This. Let Dad and his family care for her for now .

Must be a tremendous shock.

Are there any support groups locally for mums of children with additional needs or disabilities? Can you look on fb? It might help not to feel alone.

I know lovely families of children with downs syndrome through similar groups. You won't be alone