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

The hurt in your post is overwhelming.

How old is your daughter?

Do you have any irl support at all? Someone to talk to?

Because you've talked about suicide, have you considered calling the samaritans? Have you told anyone that you feel so desperate?

https://www.samaritans.org/

I don't know what else to say. Hopefully someone else will be along with more warm words and some experience.

I don't judge you for how you feel, it must be difficult and to have had all the tests and think everything is fine with the baby and then find out at birth must have been such a shock.

Do your family help out at all? If they're threatening to disown you for letting her dad have full custody are they stepping in to give you respite?

Didn't want to read ans run, although I haven't been in this position. Start making a "fuss" and get as much support as you can. Practical support with childcare and respite care, help with your mental health, financial health through whatever benefits are available to you. Consider if partners elderly parents will have baby for a day or two per week each week. Leaving your child with then permanently might not be an option, but a more equal split between you and your partner / his family might be tolerable for your conscience. You do need to live too. I'm sorry you're in this situation

speak to hv and social worker for children with disabilities. Let dad take over majority of care . It s fine if his parents are happy to take her.
You are in shock it s normal
but dont let anyone criticise you.

How old is your baby?
You are in shock and grieving the child you thought you would have.

Giving birth is one of the most dangerous things a woman can do and still holds risks even when medical intervention is available. It takes a whiles to get over the emotional impact of birth even if it is straightforward and trauma free. Have you had a birth debrief?

Your life will be different but it isn't over, you still have a lovely baby who will love you and who you will get to experience both challenges and also successes and you will learn how to navigate the world in this new way together.

Can you look into groups and charities for people with down syndrome even if your child is too young to attend and go yourself so you can get a realistic idea of your journey going forward and some real peer support. At the moment you are shocked and overwhelmed but having a plan of action might be helpful.

Please speak to someone in real life, it sounds like you need urgent help to keep going day by day. You can then start to think more medium/ long term. You will not be a bad person if your child goes to live with someone else, whether short term during this crisis ( that doesn't mean it's a permanent state), or long term/ permanently. These decisions dont all need to be made just now. I have never walked in your shoes but seen lots of families who have and it takes a huge toll. You need a lot of support whatever decisions you make.

Sweetheart, it is entirely natural to be feeling this way especially when tests didn’t pick up Downs. I’m not a doctor but I would say that the placenta fail doesn’t change the fact your daughter has Downs just that her developmental stages may (not necessarily) be a bit behind.
You are understandably in a state of shock. Can you get more help in via Health Visitor?

If you can’t face the journey ahead, be gentle with yourself and consider having her put into care with help of Social Services. You have to be sure you want this and they test you all the way to leaving day.

For now, take it day by day. Focussing on the doctors is a understandable reaction but the underlying pain in this is that you have a baby born unexpectedly with Downs.

Sending you lots of hugs, please seek help for yourself. Take care, my inbox is open if you want to chat.

I'm sorry you are feeling this way. It is normal to grieve the baby you thought you would have. You need to seek support for your mental health, make an appointment for your GP and speak to your Health Visitor. I have a friend who had two children born with Down Syndrome unexpectedly. She had a page on Facebook called Hormones and Chromosomes, take a look. She writes so beautifully about her feelings when they were both born, the challenges she has had but also all the wonderful times she has had raising her beautiful children. Take a look and try to connect with her. There is no better support than from those who have been through what you are. Good luck, take each day as it comes

You need help possibly trauma therapy. Your family may be quick to band around disowning you but are they aware you are suicidal? Speak to her dad and have him take her and arrange visitation. Get on to your health visitor and tell them you are suicidal and are giving her to her dad as you are not able to look after her and need help. They should be providing you mental health support but you may need to push with gp and health visitor for this. It is good you have recognised you need to consider her dad having her and that shows you are a good mum.

Have you been informed what her future is likely to be? Are you catastrophising or have they said she will need lots of additional support? I am sorry you are feeling this way and hope you get the support you need both for you and your daughter

Did you post about this while you were pg? It sounds familiar.
It sounds very very tough but I said before and will say now if you don’t feel equipped to raise your baby and believe she will be better with someone else then that is ok. You were pressured before you had the baby and are being pressured now
People criticising you and/or telling you what to do arent in your shoes . Does the father want to raise her? If not speak to SS about adoption

Thanks for yer responses everyone.

I have never posted during pregnancy as I did not find out until I had her by emergency section.

She is 17 weeks old now, youd think the shock would have died down, some days im okay and other days it gets me back down again, I am probably thinking the worst. But i have only recently got back results from placenta which was really really bad and showed alot of rare findings, ive googled them all and they are related to hypoxia causing cerebal palsy etc.

Just that on top of the down syndrome i cant take anymore.

I have sensory issues with noises especially repetive noises and any stimming type behaviours or noises have always sent me into a spiral of anxiety, definitely undiagnosed autism. Im probably taking this worse aswell because my life has been traumatic and ive been processing and trying to heal from alot of trauma and something like this has put me into overdrive i cant believe its happened me. I just feel like i am not equipped to deal with future.

Everyone says take it day by day which i have been doing, but its the fear of the unknown and how shel be sends me spiralling. It hurts thinking i cant be a mother to my first baby, feel like a failure

My family know im suicidal but dont really care. Just says baby needs her mother and thats that.

I'm saddened by the lack of support you have.

I cannot even begin to imagine how you are feeling.

Have you sought legal advice yet about whether you are able to sue the hospital for negligence?

At least with a financial payout that might lessen some of your worries.

Baby needs someone to care for her.
You need to care for you.
It s ok to hand over baby to others while you recover

Please speak to Samaritans or call 111, or the Emotional well-being team, or MIND, call CRISIS team if you are really struggling today.Please don't just sit and take it, there is help available and the first step really is the hardest. If you can wait till tomorrow , phone your HV or GP and tell them exactly what you have said here.
You need to look after yourself, would the father do50/50 care for now so you get a break and medical help?

Sorry, I think perhaps you posted not long after you gave birth.

I think you should get help to talk it over with someone but having her taken into care would be better done sooner rather than later.
Despite what people might say, and unpopular opinion I guess but it's not for women to martyr themselves and raise a child when they don't want to.

So sorry you’re going through this. No words of wisdom but I just wanted to say I’m currently on holiday watching a Down syndrome child have the loveliest time with his mum in the pool. He’s the smiliest, cutest baby. They all look so happy. Just didn’t know if knowing that would help at all, to make you realise that there is light and there will be so many good times. Thinking of you.

This child will bring a surprising amount of joy to your life if you can find it in yourself to open up to everything. There are many support groups where you can meet other parents . My daughter cannot walk, talk, eat, do literally anything and although life is hard and not what I planned she has bought an unbelievable amount of joy into our lives . One smile or laugh from her makes me so happy and she taught me to slow down and find the joy in the small things .
I know it will take some adapting to and I know this life isn't for everyone so if you really feel unable to move forward, there are lots of wonderful families who would be so glad to adopt your little one . Good luck op 💐

OP not a lot to add that others haven’t said, but another person wanting to chime in to say you are absolutely not a failure or a bad mother. And just wanted to add PANDAS to the list. They were incredibly useful when I had suicidal thoughts with PND. And contact whatever Down Syndrome charities are out there? Happy to do some research for you. No one will judge you for having these feelings, but they’ll be able to offer specific help.

I get it op I think you knew the facts you've had made a different choice which is why they test for such things. I think its not just that your baby has down syndrome but any further implications caused by the placenta not working as it should have, accompanied by the breakdown of a relationship I can see why you feel like you do. It's all very well your family commenting but their not supporting your have you spoken to the health visitor?

If you think you are autistic then getting on the diagnosis waiting list is important so you know for sure however there is a large overlap of ASD behaviours and those caused by trauma and it can be tricky to untangle them.

I would also request counselling from the GP for your past trauma and also the trauma of the birth.

Whether you have ASD or not you can put things in place, now obviously you need to hear if your baby cries and needs you but earplugs, ear defenders, noise cancelling headphones could all help limit your own sensory overload and help you cope.

OP you need support, reach out to everywhere you might find it, GP, health visitor, social services, Downs charities and support groups.

Anyone would be struggling and you are a single parent and were completely unprepared, family are not being very supportive by the sounds of it.

17 weeks is such early days.

I do think it sounds like you need a breather. If her dad is offering to step up and care for her, I think you should consider this offer. Just for a while.

In that circumstance you will need to release control and accept that if he wants his parents to help whilst he works, you can’t dictate to him what he can and can’t do.

It seems like you are trying to do everything. Be single mum, love your baby, deal with thoughts of the future, keep your family happy. You need to break it down to one thing at a time.

If you can get help with baby, you can focus on healing, maybe get some therapy, sort out plans for the future. Then you can go back to the relationship ready to be the mum you need her to be when you are ready. It may only take a few weeks. Might take a bit longer. But I know you will get through this.

Aisling Bea the comedian (who’s dad killed himself) said something about suicidal thoughts that really stuck with me and that’s that if you feel there is no hope, remember that’s just how you feel today. Try and get through today and see how you feel tomorrow. You can get through the worst of times like this, putting one foot in front of the other until one day, i promise, there will be light, and you’ll be glad you stuck with it.

Oh OP, please be kind to yourself. 17 weeks is nothing. Tbh I think I was still reeling 17 weeks in with my first and that was with a healthy baby and supportive marriage. You've been dealt a very difficult hand - but that doesn't mean you won't be able for it, or that it won't be a positive experience in a different way to your plans when pregnant.

Please make it clear to your GP that you are suicidal. Contact every charity you can, get every scrap of help you can.

If your placenta failure was due to negligence then do consider suing, as the money will help open doors.

Firstly I just want to give you a virtual hug, finding out your longed for child has any additional needs is very tough, been there!

Secondly get as much information as you can on Down syndrome, I support a lad with this at work, he volunteers for me, I won't claim he isn't challenging at times, but he's pretty self sufficient and lives independently with support workers (since 21). The placenta issues is separate and causes more unknowns, ask for a full debrief on what happened as ask for a support person to be with you who can help decipher with you - this is a normal thing in these situations. Finally get support for you, can you gp help? Also how old are the grandparents? If they aren't frail then using them for one or 2 days a week would give you a bit more space - shared custody is absolutely fine, as is your ex having more days ignore family/friends saying otherwise, postnatal depression is common and with the addition of the situation you need all the help you can get, take it.

Going forward if you ever want to pm me for support please do, for confidentiality reasons i can't put our full situation here, so rare! But I really do understand