Diagnosis of lethal condition

[Habbibu]

Am musing about whether even posting this is a good idea, but maybe I'm in a sufficiently good place to start this thread, and it may help others in future.

I've looked at the other threads, and realised that when my dd was diagnosed with anencephaly, I wouldn't quite have fitted in either. I have wished many times that her lesion had been further down her neural tube, so that she would have been disabled but alive.

But we didn't choose to let her live her natural life-span, however short - we had her induced at 21 weeks, so yes, a termination. I'm surer now, since going through that, that if she'd had a chance of survival we'd have clung to it, as losing her was so hard, even though she had weeks, maybe a couple of months to live.

So, for those of you whose unborn child has recently been diagnosed with a lethal condition, or who have terminated or carried such a child to term, maybe this thread will help you - I don't know. Personally, I hope it's quiet, and nobody else has to go through it. But if you do, here it is, and here I am.

[flightoftheeasterbunyip]

Habbi - you're wonderful.

[LuluisgoingtobeanAunty]

i think it shows that there are no neat and tidy boxes to put this issue in. many myriad shades of grey. can't really say anything else

[Habbibu]

Thanks, justa - but it doesn't feel courageous. It's been part of my life for almost 4 years now, and I have, for the most part, made my peace with it. I just wanted a thread for people who will be in the position we were in, and neither of the "main" current threads seemed to fit.

[snigger]

Looked at this thread and didn't want to scoot off without saying your post has left a lump in my throat, a moment of relief that we were spared this kind of decision - and had we not been, your post would be invaluable in its bravery.

Sorry for your loss.

[Chooster]

I had a very similar situation habbibu, and if yours was 4 years ago then its roughly the same length of time ago. At my 12 week scan with DS2 they found a problem in that the nuchal was far too big. We had more scans and a cvs but nothing was coming back conclusive and the cvs results were all clear. However slowly the baby was developing a sever case of hydrops which was restricting organ growth. Something was causing it but we didn't know what (when I say we I mean the consultants). At about 20 weeks they realised that the babies joints had all fused and there was no hope of life once born - they said that there was a 90% chance he would die before term anyway. So, like you we made that awful decision to terminate at 21 weeks.

You'll know how awful the process is and how difficult the first few days are. Going from pregnant to not pregnant was just so fast and no baby at the end to care for.

We called our DS2 Henry and even though I've gone on to have another DS, I still think of Henry as my middle son although I rarely talk about it as it creates too many questions and I dont want people to feel awkward. But I have my own way of recognising that I have 3 sons (my Dh had a necklace made for me with 3 silver pebbles on with the boys' birthstones on).

The post mortem revealed that henry had something called multiple lethal ptergia. We have a 25% chance of any child of our having it which was something that came as a massive shock. But as I said above, we've thankfully gone on to have another son.

This was all in December 2005... when did it all happen for you habbibu? How do you feel now??

[sydneysuze]

Habibu thank you so much for starting this thread. I'm so sorry for the loss of your little girl. I too have been looking at recent conversations about scans, terminations, choices and so on and feeling that my situation didn't quite fit. I lost a little boy at 24 weeks last August to a fatal, inoperable combination of heart defects. I hope, like you, that this thread will be quiet, that few other MNetters will have to hear the dread words 'incompatible with life' or 'inoperable fatal condition' uttered about their own child. But if they do, they are not alone - many, many others have walked that difficult path, and survived.

I am currently 18 weeks pregnant and incredibly thankful to report that scans have so far shown this baby's heart to be free of fatal conditions. I am here to help anyone who needs support when faced with the cruellest diagnosis.

If anyone is lurking who has lost a baby and needs help, a book that really helped me was 'When a baby dies' by Nancy Kohner and Alix Henley, produced by SANDS and available from Amazon. It is relevant for anyone who has lost a child through late miscarriage, stillbirth, neonatal death for unexplained reaons, or termination for conditions such as anencephaly.

The SANDS website has personal stories of parents who have received fatal diagnoses and details about the decisions they made. It also has good advice for friends and family members of parents in this situation.

[duchesse]

Poor you- it's a terrible choice. I was "lucky" in that my anancephalic foetus chose to expire gently at 12 weeks' gestation and I never needed to make that choice.

I do not know what I would have done if s/he had survived for longer. I suspect, probably the same as you- I felt physically terrible so not much point in continuing with a doomed pregnancy.

[sydneysuze]

Cross posted Chooster - I just wanted to say I'm so sorry for the loss of Henry, and I can completely relate to the difficulties of recognizing in public that you have had 3 sons - I think the necklace sounds like a wonderful way of wearing your 3 boys close to your heart.

I am struggling at the moment when people remark on my pregnancy and ask if it is my first child. I always want to say no and acknowledge my little boy, but as you say it is hard to explain, especially to people you don't know well. I also dread comments such as 'well it was probably for the best', as I had today from the girl who waxes my legs...

[HumphreyCobbler]

I know that feeling of wanting to acknowledge the child you have lost. It is so wrong to say I have two children when you really have three. I ususally do say so now, but it has taken three years to get to that point.

Thank you for starting this thread Habbibu.

[Chooster]

I know what you mean humprey - I have mentioned it a few times very recently but it still feels strange saying it out loud.

I thought I'd pop this poem on here as it really struck a cord with me when I first read it. It was from a lady on the ARC website and its so simple. It makes me sad when I read but not a bad sad if you see what I mean.

A simple question

If you ask if I have children
I'll smile and say I do
If you next ask how many
I'll pause and then say two

I think of my third tiny child
Who had to leave this earth
I had to say goodbye to him the moment of his birth

So, in this world to love and hold
Are two for all to see
But in my heart and in my thoughts
Will be forever three.

[linspins]

Chooster - that's such a lovely poem. I'd heard it before, but it now has particular resonance to me, although I'd need to change the numbers a little... Thank you for making me (good) sad. xxx

[Habbibu]

When I was pregnant with dd2, I decided always to answer honestly when asked "is this your first?" - I'd just smile, and say, no, we lost a little girl last year. And people's responses were just great - thoughtful, kind, always making feel glad for having said - a Saturday girl in TopShop in Glasgow really sticks out, even though I don't remember what she said! I did get one "everything happens for a reason", and restrained myself from committing gbh.

I get confused on here - sometimes my living dd is dd, sometimes dd1, depending on context. What I'll do if I ever have another daughter I don't know.

Chooster, dd1 died in June 2005, so just a few months before your wee boy. We had then, and have had since, such utterly extraordinary care and support from our hospital, that I credit them with much of our mental well-being, and dd2's safe arrival.

Plus I had an extraordinary boss - he made me cry on his leaving do lately, by talking about a funny mistake he made when I first told him I was pregnant - but he used dd1's name, in front of all these people, some of whom knew me, some didn't, and very few of whom had ever asked anything about her.

Hearing her name in that context was so - normal, and thus so utterly moving. Such a simple, yet so thoughtful thing to do.

[HumphreyCobbler]

Habbibu I know exactly how you feel about your boss talking of your daughter. A few months after I had my second son I bumped into an old friend I had not seen for some years. I told her about losing ds1 and introduced her to ds2.

A few days later a parcel arrived in the post with some clothes for ds2 and some bubbles "for him to blow up to his brother".

I loved the way that she was able to remember him so easily.

[greatwhiteshark]

Lots of tears here from reading this thread. What crap and shit some people have to go through. I'm in awe of all of you who have suffered so much, but are doing your best to support others going through similar things. Your children are so lucky to have you for parents.

[Chooster]

So pleased you got great care habbibu. I did as well. The hospital I've been to with all the boys is a big, busy city hospital and often people complain about it being too busy and impersonal. But when there were issues the care I had was fantastic. The consultants spent so long explaining things to me and offering me all the tests and counselling they could. The midwives were also brilliant - I lost a lot of blood after having Henry and ended up haemorraging at home a few days later and the midwife kept visiting me during this whole time rather than just not get back in touch because I wasn't pregnany any more. Its little things like that that make all the difference. I get quite defensive about the care in Edinburgh when I hear people bitching about it .

So nice that your friend acknowledged your DS1 Humphrey. And your boss habbibu. Henry hardly ever gets mentioned by any friends / family. Mainly because people just forget...

Greatwhite - It is an awful situation but when it comes to it you just have to get on with it. Sadly its the cards you are dealt and nothing can change it.

[treedelivery]

Just dropped in really, just to offer condolences to those who lost their sons and daughters. To all here and all out there lurking and wondering about posting, or not wondering, but reading and remembering their baby.

I don't know, as I am not in your shoes, but would it be a respectful thing to make a posting of the mummies and the baby they wish remembered, with any details you wished to add [name, date they were born]? Posters coming in to the thread could cut, paste and add their own baby.
This may be an awful idea - I dunno. Am very fine about being very wrong here!

[Habbibu]

Hmm. Ok, well, imo that belongs better on the bereavement threads - I guess I'd imagined this as being a support for people who've recently had these conditions diagnosed, and want to talk it through.

But it's a MN thread - who knows where it will go! If that's what people want to do, then that's fine, obv - it's not really for me, but doesn't bother me if other people want to.

[Habbibu]

Oh, am glad you posted that, bb. I don't feel bad about our decision, but always do wonder how you'd do the next 3/4 months - however long it is. And that was really, for me, the point of this thread - we knew we had made an actual decision, but sometimes I think that termination is seen as a given for fatal defects - by hcps amongst others - though not in my hospital, I'm glad to say.

I do think some people can feel rushed into termination, and wanted this thread to be able to show all options, etc. - so thank you. It's much appreciated.

[sydneysuze]

Yes, thanks for that Belgianbun. I agree with Habbibu that it is so important to have all possible options represented.

I know myself that in the time between my diagnosis and deciding to end the pregnancy one of the hardest things was dealing with people's totally natural questions. Things like how long I had to go, or did I know if it was a boy or a girl - I found it impossible to cope with these things without losing it completely. This, and the fact we knew his condition was deteriorating all the time, was one of the reasons I knew I would have been unable to carry my poor baby boy to term. But I needed to come to that decision in my own time.

I also found my hospital supportive of whatever we chose to do, for which I will be eternally grateful - we had time to be sure we had thought everything through.

[saintlydamemrsturnip]

wannabe posted a link to a blog the other day of a little girl a few weeks old with anencephaly. Obviously her time on this world won't be long but if anyone was considering giving birth to their child with anencephaly it would be a website they might want to see. There's video of the girl with her mum. I won't post it here yet (unless someone wants me to) as I'm aware it might be upsetting for some. I've seen a similar blog for a little boy with trisomy 13 who lived for about 4 months. I think as Habbibu said 'but sometimes I think that termination is seen as a given for fatal defects - by hcps amongst others' - and although I've never been in the position of having to make a choice, the blogs did change my way of thinking about these lethal conditions.

If anyone wants a link just let me know.

[Chooster]

It is an interesting point and one I thought quite hard about. The hospital in no way pressured me to terminate and provided me with as much information as possible. In my case there was a 90% chance my son would die before term and if born alive he could not breathe so would die staight away. As hard as it was to terminate I just couldn't live each day of the remaining 4 months wondering if today was the day he died in the womb. And I knew I couldn't handle the questions from well meaning strangers or work colleagues knowing that I would never bring my baby home from hospital. The final straw for me was how to explain it to my 3 year old DS. Old enough for people to say to him "Are you looking forward to your new baby brother / sister?" But not old enough to cope or understand that fact that there wouldn't be a baby brother / sister for him. I just felt it was too much for him to deal with although had he been older then perhaps involving him would not have been a bad thing.

All these reasons are very personal and based on what I know about me / DH and DS1. I fully appreciate and understand why people would make the decision to carry on with the pregnancy.