Charities or support groups for parents with seriously ill babies

[Diorissimo1985]

Posting for traffic in Chat (aware this is not the right topic)

My niece is 8 weeks old and in intensive care, she’s been there since birth (neonatal) and there is no timescale for her going home. She may not be going home, which is obviously very hard to contemplate.
My DSIS and BIL have 1 DC already and they are splitting time between home and hospital, and it is so tough. DC1 still hasn’t met DC2 because of Covid restrictions and I feel they are breaking under stress, worry, guilt, anxiety, shock - everything.
I live abroad and I’m so desperate to offer support - my DSIS can’t seem to find any support groups or charities that are appropriate for parents who aren’t still at hospital or haven’t taken baby home. She says all the charities she can find are for preemies (new baby was full term) or for parents adjusting to life at home with DC with life limiting conditions.
Does anyone know of any groups or charities that fill the gap i.e parents who are in the purgatory of not taking baby home and have a very uncertain future.

Any ideas or advice gratefully received.

Bump

Have you considered looking at or contacting their local children's hospice. In the south east one that offers lots of support is Demelza House. It doesn't just offer services to children and families who are physically there either, they do lots of outreach type work. Even if their local hospice isn't quite the right place, they may be good at signposting you onwards.

Best of luck to you and your family xx

Thank you @Findahouse21 good idea x

Bliss is the charity for babies born too early or too sick. They will have lots of support to offer

I agree - try BLISS. They usually have volunteers going into NICU but obviously don’t right now. It’s not just for premature babies, but also for babies who are unwell.

One of my twins spent 2 months in NICU and it is a hugely traumatic experience - the sooner she can get some support, the better.

Her NICU may have a parents group, Facebook support group, she may be able to access counselling but it varies massively by area. I was in a complete daze and was just so focussed on my babies for the whole two months and it all only hit me much later what an awful experience it was. They were my first so I didn’t know any different.

I hope she can find some support and that things improve

Thank you
@SinkGirl sorry to hear about your DC .
DSIS says there is no counselling service via the hospital, but I’ve suggested she see her GP as soon as possible. I will also look at Bliss although DSIS said she had had a quick look at seemed to think it wasn’t for her. I think it’s the splitting her time between each DC at home/hospital that is so tough, she said she feels like she is living in limbo but life continues around her

Yes it does feel a lot like that - I had one baby at home after the first couple of weeks and one in hospital and it felt like our lives were paused. Even more difficult when you don’t know the prognosis or what to expect.

BLISS can definitely offer support in this situation, they are the main charity involved in NICUs. If they have a diagnosis already then diagnosis specific charities and support groups can be a huge help too. My son was born with a very rare illness so talking to others with experience of it via a Facebook group was a huge help.

Thank you @SinkGirl