Friends baby 'may not be compatible with life'

[hambo]

Hi there

My friend has been told the devastating news that she has a 50% chance of her baby 'not being compatible with life'.

She has undergone lots of tests, including genetic ones.

She will find out soon (want to be a bit vague here) whether it is bad news, (baby can be born but will be poorly), or terrible, heartbreaking news...(ie she will have to deliver baby early).

I need help here from people who may have been through a similar thing. I want to be helpful to her - she is a wonderful gorgeous person who is generous and kind, and I have no idea how I can take some of her burden. Even writing this is making me cry as she is in such pain and being so strong...but ultimately she is on her own.

She does have a lovely husband and another little child.

I hope I have posted this in the correct place, let me know if not.

And thanks, for any replies

bump

Yr poor friend. How far along is she in pg?

My dd has a rare chromo disorder that is rarely compatible with life. Pretty sure had it been picked up in pg we would have been given such a bleak prognosis we wouldn't have continued the pg. As it was we had no idea so I haven't been through what yr friend is going through. My dd is 5 now and has lots of complex developmental and health probs but she is a delight. We enjoy her every day she is here.

If it's chromosomal prob, unique www.rarechromo.org are a good source of help and information

Don't think there is any right, magic stuff you can say or do for ur friend. Just be there for her and listen and support her as I'm sure you will do. Maybe practical stuff like offering to take out her older dc and cooking meals/ shopping also good

Don't ever say anything along the lines of 'it's for the best' should she loose the baby. Her grief will be the same whatever the probs the baby has/ may have

Best wishes to you

I was in this situation with DS1.

The one thing which may not be mentioned to her is that, even in the face of a catastrophic diagnosis, you do not "have" to be induced. In my day, ARC was still SATFA and did not really then offer support to those who opted to let nature take its course. Not many go down that route, but it is a valid one.

I hope however with every fibre that your friend does not face this situation.

If not "compatible" ( what a distressing term that is) then SANDs can provide excellent support. Check them out so you can hand her details if required. The hospital should be able to provide contacts of support. Encourage her to ask about this.

I think you will have to take the lead from her. Obviously you can provide practical support with meals and helping look after her child when she's in hospital and home. Do ironing etc..

Emotionally who knows ..... Just be there and don't be afraid to speak about what's happening... You can't make things worse cos' that's happening already.

Just knowing she has support will help her - it really will. Even when you don't want people around you it's still a comfort to know there's someone there when you are ready. Poor her. Hoping for a miracle for her.

Thank you herjazz.

I think it is chromosomal, all pretty hard to follow.

Hearing about your daughter makes me hope that she can pull through and have a baby to love.

Thanks for your suggestions and also about what not to say. It is exactly things like that which dont seem important but really really are.

i was told at 35 weeks pregnant that my son's condition was incompatible with life and that he'd die at birth. My coping mechanism was to go home and plan his funeral- right down to the hymns and what i wanted people to wear. I felt I had to do something positive for my little baby.

A week later we saw another specialist who told us DS was unlikely to die, but would be severly disabled and would just lie there and only have a suck reflex.

As it turns out, DS is disabled, but is exceeding expectations. He will be a year old next Tuesday and is the centre of our world. He's way behind babies of a similar age, but is doing well.

The friends who were the best help to me were the ones who came over with a cooked meal and just left it on the doorstep- we were so traumatised that we couldn't get our heads around cooking- and we had our older son to look after too. The friends who let me just ring them up and cry down the phone for ages and just listened were brilliant.

The people I found irritating were the ones who turned up unannounced for a chat and stayed for ages, and then left me with the washing up to do and having to race around before I collected Ds from preschool. Or the one who brought a meal over and then tried to invite herelf over to eat it with us, when all we wanted to do was hybernate as a family.OH yes, and the one who asked us if we'd be trying for another baby.

Just be lead by her. It's a terrible situation to be in. Just be there for her.

YOu're a brilliant friend by coming on here to ask for advice before just jumping in. I'm sure that your friend will be grateful for your support.

Please keep us posted. I'm blubbing as I write this, as it is similar to what happened to us at roughly the same time.

Thanks to you all.

A friend of mine was told this too. Her little boy was diagnosed with T18, and was told he wouldn't survive the pregnancy.

He is now 14 months old, and although he has several health problems, he is a happy boy, and has just come through a major operation that will really help his quality of life, regardless of how long that is. Just wanted to share something positive x

Be led by her when it comes to support - some days she might want to rant and scream, others she might want to cry on your shoulder. Let her know both of those are okay, and that you're there for either.

I hope there is a positive ending to the story for everyone.

Sleepysox, thank you for your advice. I just live down the road and can easily leave some dinner on the doorstep. I thought it might be a bit weird...(text from me saying your dinner is outside!). Selfishly having something like that to do will make me feel a bit better too.

She is so so strong.

Thanks again

Thanks Onimolap..I did wonder about that - it may be a better choice for them...she has been told she will have to deliver the baby regardless. Oh even typing this just seems so unreal.

Thanks pancake.

Thanks verity - your poor mum.

It is hard to know when to speak of things and when not to.

SirBoob- that is happy note and I really hope things work out

Than you everyone - I really appreciate your replies, I have a clearer idea of what to say, (be lead by her), what not to say, and how to help practically...

I just wish I had a magic wand.

I hope I didn't sound dismissive of ARC before: I was talking of over a decade ago and I believe now they do support all range of choices, as do SANDS who were fabulous when we really needed them and found us a family who had made the same choice.

No you didn't seem dismissive at all. I'm glad there are people to help my friend out and speaking to another famly is a great idea. I really really hope my friend gets the same opportunity.

Thanks

We were told this. Refused further tests. Baby is asleep with his teddy right now. And he is fine.

I know someone else whose child had a syndrome not meant to be compatible with life though could possibly live until they were 1 . She is 9 now.

Sometimes doctors are wrong.

Goosebumps all over. I can hardly hope for the outcome you had Pink.

Thanks

This sounds similar to my situation, I'll try to be brief.

DS is due on NYE, which makes me at wk26. At our wk20 scan we were told that something was wrong. Cue specialist opinion #1 a week later where we were told his kidneys are huge, full of tiny cysts, I have low AF and either I will MC, or he will live for a few hours/days. The low AF can affect lung development, which means the lungs may not work well enough to even cope with a ventilator. Offered termination.
One week later, specialist opinion #2 (more senior bod) where we were told although the kidneys are enlarged, they are not that big, and this consultant isn't convinced the kidneys have any cysts (plus although my AF is v.low, it came up much higher on this scan - told it is a 'crude measurement').
Both consultants leapt on possibility of genetic kidney problem as DH needed one kidney removed at a few days old; and I have a disability, which I was told DC have a 50% of inheriting.

Saw a geneticist 2/3 weeks ago, who told us if the baby doesn't survive, can they do a PM to find out cause. He is not convinced the kidney issues are genetic & is completely convinced that DS' problems are not caused by my 'difficulties'.

We now have to wait until almost wk30, for another scan to tell us if one of them's right, or if it's something entirely different. The 2nd specialist did make it clear that if things deteriorate (eg kidney changes for the worse), then he will be proved wrong.

I can understand your friend's heartbreak - I can't let myself get excited as I'm all too aware I might need to plan for my precious baby's death. I've actually told DH I don't want a carseat until the baby is here, and we know if there is a chance he might make it home (he can always run to the shops!). My friends tell me to be +ve, and I know they'll support me whatever happens. For me the waiting between scans/information has been worst - but science cannot always tell us absolutes -and I am grateful I have some hope to carry me through until the next scan. I have found the lack of information from hosp' makes it harder, although this is apparently down to them genuinely not reliably knowing what is happening or will happen until we are further along in pg (doesn't make it easier for us tho').

The most helpful thing so far was family & friends taking DD out on the day of the 2 specialist scans - we knew we'd be emotional and wanted a chance to get our heads round it first (eg floods of tears etc). This next scan, DD will come with us. We are religious and have found prayer valuable in supporting us emotionally. After this next scan we are taking DD and ourselves off to a big parkland with a picnic (determined DH is not driving me home in floods this time, while struggling to keep his feelings in).

I will be thinking of you and your friend (plus her family). Hugs to you all.