Support for families with baby in hospital

[Diorissimo1985]

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.

That sounds incredibly tough for your sister and her DH as well as the wider family. Are you able to give a bit more information about why baby is in hospital (only if you feel happy to)? It might be there is a specific charity connected to her condition/illness that might be able to help?

Thank you for your reply @Sunshinegirl82,
she has a rare genetic condition causing severe mental and physical delay. She can’t, and likely won’t do anything unassisted i.e she is ventilated and on a feeding tube. Future v uncertain as to how she will progress as I believe the spectrum of how people are affected is very wide. She will be on oxygen if she does go home and unsure if she will walk etc.

We have looked for a charity specifically for the condition but there isn’t anything

Has your sister tried contacting Bliss? I know they are mainly known for supporting families of premature babies but their website does say they also provide support in respect of full term babies that are unwell. They might be a good starting point?

www.bliss.org.uk/parents/support/emotional-support

Not sure if they are going to be of any help but Bliss mentions in their website that they are there to support families of premature OR sick babies.

Lots of information on their website.

www.bliss.org.uk/parents/support/emotional-support

I am assuming they live in the uk, if not ignore!

Thank you, going to contact Bliss. They’re in North of England

Swan UK? Although if it is a diagnosed rare condition maybe or

www.geneticdisordersuk.org

It may not help in terms of emotional support right now but definitely in terms of practical support going forward - www.reactcharity.org.

They provide equipment of a basic, essential need to children with life-limiting illness. This can be medical equipment, travel costs to and from hospital, sensory equipment, washing machines. Theres lots they will consider. They support families on a low income or on income support so not sure if applicable to your Dsis & family.

They should also ask the staff to contact their local children's hospice for support. Or contact them directly

I don't have any advice, just popped on to say I'm so sorry and I'm praying for you all xx

Thank you so much all