Struggling after birth of baby with medical needs, where can I get support?

[Babybrain0110]

Hi everyone hope you’re all well. I had my 3rd daughter 3 months ago and she was born with treacher Collins syndrome. A complete surprise at birth. She’s had a few medical intervention and to say I’m struggling is an understatement. I don’t feel like I’ve bonded with her I’m feeling so much resentment towards her and how she’s impacted mine and my other childrens lives. She doesn’t feed will or sleep well and I’m just mentally exhausted. I’ve tried reaching out to the gp and health visitor and they’re just not bothered. I’ve got no family support or support from my partner. I’ve not had a shower in 2 weeks because I just can’t find the time she’s always in my arms or I’m at appointments with her. I don’t know what to do I feel like I’m going insane and having awful thoughts . I guess I just wanted to know if there’s anywhere else I can get support from.

Approach your local children’s hospice - they’re not for end of life but can often offer both emotional and practical support for your child’s condition and you as a family - they can also signpost to support groups and other families going through the same
is your child under a specialist? You need to make a noise with them to get support, treatment plan etc
You’ll be under your HV for a while longer - they absolutely should be supporting
your partner needs to step up massively
this is a huge shock for you all
but you must take care your basic needs - he can and should be able to enable you showering
this is so tough for you x

I told my health visitor that I was seeing dark shadows walking around my house and it took her 2 weeks to come out. The GP told me to take a bubble bath to feel better. My partner can’t handle the baby crying he puts her down and leaves her to cry it out if I’m not there. I’ve contemplated ringing social services and asking to revoke my parental rights and to take her. I don’t think my mental health can take much more I’m just at a loss

What a shock for you, I’m sorry this has happened. I think it has to be one day at a time at the moment and talking to whoever you can.

You could start with the charity Contact which offers some support and advice for parents of disabled children. They have a helpline for emotional support.

Their page https://contact.org.uk/conditions/treacher-collins-syndrome/ lists their helpline numbers and also links to some specific Treacher Collins groups.

Keep talking here too. Try the SN section it’s very supportive.

I’m sorry you are going through this, and with such little support. I had a baby with a serious condition diagnosed at birth too and spent months unable to cope with it.

Some practical suggestions:

• put baby in a bouncy chair in the bathroom while you shower. She might cry but it will be for a limited time and she will be safe.
• do the hospital neonatal unit offer counselling?
• what ongoing support do you have from the hospital? I would skip the HV and focus on the support for your dd’s condition and then the support they can provide parents
• do you have support from the hospital or community team for feeding?
• where do you live? There are charities that can help a few hours a week, or I’m sure a local nanny could

I was also going to recommend Contact as PP has mentioned, they can be really helpful.

I’m sorry you’re struggling OP I can only imagine how difficult it must be and with no support.

I would also advise contacting your perinatal mental health team for support, GP/HV should be able to refer you if you ask or failing that you can contact them yourself.