Continuing a Pregnancy with a lethal diagnosis

[TheDisillusionedAnarchist]

I am 23 weeks pregnant and sadly it was confirmed yesterday that our baby has Edwards' syndrome (trisomy 18). We had already known that he or she had a very complex cardiac defect, a small brain anomaly and a possible diaphragmatic hernia so we had partly anticipated this.

We both are committed to continuing the pregnancy, termination just doesn't feel like the right option for us, though I can completely understand how it does for many people. I wondered if there were others out there who had or are continuing a pregnancy with a lethal diagnosis and how they are handling people's questions and ideas about birth plans when you are not sure if the baby will be born alive or not and how long it may live.

I am so sorry to hear this.

I don't have personal experience, but I know of people through Sands who went though similar. It may be worth contacting them or looking on their website to see if they can help.

I also remember a charity for cdh - congenital diaphragmatic hernia who may be able to put you in touch with people who've been through similar. www.cdhuk.org.uk/about-cdh/what-is-cdh/

Once again, I'm so sorry you're facing this.

I am so very sorry you have got this news

There is an organisation called SOFT www.soft.org.uk that supports families in your position. I think that there are other support groups out there - certainly there are for those whose babies are diagnosed with anacephaly and who choose to continue their pregnancy.

Wishing you all the best.

I'm so sorry to hear this.

Our dd2 was diagnosed with Edwards at 22 weeks. We decided a termination was best for us. I totally respect, and understand, your decision though.

Arc have been amazing for us. They support parents through the screening process and whatever decision they make. They have obviously helped me through my decision but I know they also support parents who carry to term.

I also know that soft are a supportive charity for people who have babies with trisomy 18 who are or have lived for however long. I have no experience of them but I have heard good things about them.

Have you been given a care plan for if your baby is born alive? This is something they should be providing you with.

Again I'm so sorry. I don't really know what comforting thing to say tbh.

In terms of telling people I guess maybe say exactly what you have here. You don't know if your baby will be born alive and if he or she is you don't know how long they may live. However, it will probably not be for very long (I'm guessing with cardiac defects possibly not weeks and months?)

When our dd2 was diagnosed they could give us a very rough idea of how long her life would be. They gave us a 90% change of not making it to term and then more like hours or days as she had multiple brain and heart defects which would have effected her breathing independently.

I know it sounds odd, and I don't want to upset you, but I would possibly prepare for some 'fluffy' type comments like 'maybe he/she will be ok' or 'maybe they got it wrong'. After we had our dd2 my fil said 'you never know, with medical advances these days she may have survived'.

Kind of. We were told that in all likelihood my baby wouldn't survive but they weren't certain as they hadn't seen the symptoms before so there wasn't a test. I couldn't consider termination either, despite being very pro choice.

I don't recall many questions. I recall talking about how if needs be we'd cram all we could into that time, celebrate birthdays every day, spend the time with him. I also named him, everyone else took the cue and used his name, and the talked about the pregnancy and birth as our time together. I don't recall many questions as I guess people didn't know what to say. Don't know if that's helpful or just waffle...

Thinking of you, it's a hard place to be.

Just to add, in terms of birth plans I was very specific as I saw it as (possibly) our last time together, the end of our journey and we were doing it 100% on our terms. The midwives were very respectful of that. I also had a doula who endured that happened.

I'm sorry you are going through this. My friend's baby was diagnosed with Patau's syndrome, another trisomy that is lethal and they couldn't go through a termination for religious reasons. She was well supported with her decision, and in the end he died just before term and she went into labour herself. I don't think she had many questions about what was going to happen. I thought she was incredibly brave but she wanted to give him a chance to be loved and held even if he didn't live. I think you just have to follow your instincts and if people ask, then be honest - you just don't know what will happen but you will appreciate their support when it is needed?

Many thanks for all the responses. I have found SOFT and ARC and SANDS and I am trying to get up some courage to contact them. Just feels quite difficult right now. What do you say? I guess they will be used to that though.

Kitty-interestingly your thread was one of the first I found when I was looking for information about low Papp A and I was in complete denial it would ever be me with Trisomy 18 (the risk for us was 1 in 450) just goes to show you never know. I have read many of your posts about your daughter and they have been helpful even though you made a different decision. I don't think there is a right decision in this situation really.

Since we got the Edwards diagnosis the comments like 'I have been through similar and it was all fine' have stopped so I'm hoping for not too many fluffy comments. It's awkward though especially with people who don't know and you don't want to tell, I ran into an ex colleague in the lift when we were going to discuss the results and she asked why we were there and then worked out I was pregnant and asked if congratulations were in order and that was interesting. I did say "no actually the baby has Edwards" but not really the discussion you want in a lift, four hours after finding out.

Chazzer- did you find the doula helpful? we were considering this today, but not sure if it would be too intrusive or actually helpful to advocate

Everyone is being very accommodating, we are able to arrange appointments to meet with all the main people and they are open to a lot of what we want. Possibly a home birth if we get to term and palliative care, or to using the pool even with an induction, making plans actually seems comforting now.

Again many thanks for so many thoughtful responses.

I'm glad that some of my posts have been helpful.

Whatever decision someone makes, being told your baby will die is the most gut wrenching conversation.

I hope you get get what you need from your pregnancy and birth.

It's not the time now, enjoy the time you have with your baby. I would suggest specialist counselling at some point though. It has helped me hugely and although we will be grieving in different ways and for different things the decisions we have both made have been hard and have a huge impact on our lives. In my experience dealing with that with someone who is properly trained really, really helps.

Yes doulas are enormously helpful. A good doula won't be intrusive at all. She'll get to know you, what you want and need, and provide you with what you need. That's what their role is about, so should be intrinsic to how they act.

No personal experience, but a close friend discovered her baby had acephaly (no skull). She was told that if the baby survived delivery, she would probably only live a very short time.

She delivered by c-section, and the baby lived an incredible 12 days before dying at home in bed, lying between her parents. It was an amazing time for their family, and friends, and they don't regret any of it.

No personal experience, but Emily's star is a charity devoted to trisomy 18. They are on Facebook and t'internet

Thank you again for all the helpful responses and experiences.

It is funny how you come to terms with things. We managed to meet with the bereavement midwife yesterday to discuss options in terms of a stillbirth as this is probably the most likely outcome and they are very open and helpful about it going the way we want it to. We are tentatively thinking of plans for a burial, maybe in our own garden, it seems surprisingly straightforward.

We also had a lovely 4D scan and saw the baby moving and stretching and her face, she has my mouth. You could also see that she does have crossed little fingers as you'd expect, her first finger on both hands seems to be pointing. Her brain looks more abnormal now unfortunately but she is still growing along the 3rd centile line and after a couple of quiet and worrying days, she is back to being moderately active. Hopefully we have some more time with her.

I am finding myself a mixture of quite calm and logical and very sad but it feels good so far to be making plans. What feels less good is the attitude that well now there is nothing to be done, we're getting from medical professionals but to be fair they are also trying hard to let us have things the way we want them.

Again it has been great to hear any experiences at all and would love to hear more if anyone has some including of ideas to remember the baby and where to buy small clothes as we'd like her to have something from us.

So sorry for what you are experiencing. There is a charity called "Remember my baby" which provides photography to families facing bereavement. Could be worth looking in to and seeing if it is for you?

I've recently been through a stillbirth - it was unexpected so there was no opportunity to plan for the delivery. Being able to have things just right - the music, the atmosphere will be so important.

These are some of the things that have helped us remember our little boy. Many of them have been gifts from people who have been through similar, we have been overwhelmed by people's thoughtfulness and generosity.

The hospital did hand and foot prints.
Taking lots of photographs - in addition to Remember my Baby, there is a charity called Now I Lay Me Down to Sleep who do portrait photography for bereaved families. Worth looking into who has a photographer in your local area.
We have the hat that he wore in hospital, he has another one just the same.
Similarly, we have the same teddy as he has been buried with, which will go in his memory box.
I have a necklace with his name and date of birth on a simple pendant.
A few companies do jewelry (cufflinks, necklaces etc) that you can put hand and foot prints onto. The one we have been given a voucher for is called Silver Imprints - we've not ordered yet though.
We have a candle decorated with his name and birthday
We've also been given two rose bushes and some forget-me-nots.

We also held a thanksgiving service (in addition to the funeral) which was beautiful. We are temporarily living overseas and it offered our local friends an opportunity to come and support us, as his funeral was back in the UK.

I've also heard great things about 'now lay me down to sleep'. Their portfolio looks beautiful.

If you were looking at a cremation rather than burial there are companies that can turn some ashes into jewellery which I looked at.

In term of while you still have baby with you can you do things and go places? I know it sounds strange but I went on a school trip up the London eye while pregnant, I now think of it as a place I took her. I know that might sound weird but it's nice to look back on.

Hi

Our child was thought to have Edwards Syndrome and we decided to carry on and let nature take its course.

It is not always a death sentence. Locally there is a young girl, aged ten, with the condition. Looking at her photos she has a lovely life.

Please get as much help and support as you can. The antenatal results helpline are brilliant.

I'm sorry you have had this news.

I don't know how developed the perinatal hospice movement is in the UK, but this website www.perinatalhospice.org/home.html gives some information for parents which I hope might be helpful to you.

Thinking of you x

Thanks again so many kind replies.

I found both photography charities and it turns out now we have spoken to the bereavement midwife that he hospital have links with 'remember my baby' and she thinks they will take photos even if we have a home birth which is my preference if our baby dies before birth. That was helpful as arranging it felt a bit too much.

Chat -I am so sorry for the loss of your son. So many lovely ideas to remember him there. We had thought of a teddy but not of getting two of things.

Kitty- strangely enough going away is exactly what we're doing currently in Berlin and although it is quite hard that this is likely to be her only holiday, it is also nice to take her somewhere. I also enjoy eating out. I feel like I am feeding her lots of different flavours. It feels good. we love food and it feels like she at least is getting different tastes even if she is unlikely to experience them with us.

Bread maker- did your Dc have Edwards in the end? I have read the positive stories but while I would love to think dd will live until 10 or even 1 we knew prior to the Edwards diagnosis that the combination of her diaphragm anomaly and very complex multiple heart defects made her prognosis very poor . Realistically I know that a stillbirth statistically is the most likely outcome and that if as we hope we do get to meet her that we are likely looking at minutes or hours not weeks and months much though we'd like that.

Fermat- I am glad to hear more people found a doula helpful I think we have decided to go for one.

One thing I am concerned about now is coping with labour if she is stillborn. I would really like to have her at home in this case and so far the hospital are open to this but caution induction for stillbirth is painful. I would prefer to avoid opiate drugs at all but would consider transferring in for an epidural if needed? How did people who have gone through an induction for stillbirth or a late termination (as I believe the process is similar) find the pain? What pain relief did people need? If you used morphine did you feel it blurred the experience or was it fine? (I realise I may have little choice)

Again thanks for all the replies and sorry for the long message so much to think about!

TheDisA, I'm so sorry you are going through such a sad time.

I would also say buy stuff for her. Definitely a cuddly or a comforter. I refused to buy anything until after our 20 week scan, which is when everything went wrong. I stupidly thought if I don't buy anything then it'll all be ok.

I now regret that we didn't have anything for her when she was born. We are trying again and I have decided that as soon as I have my 10 week viability scan I will buy something for the baby, if the worst happens then they will still have something from me. I wish I'd had a cuddly, an outfit and a blanket for her. Luckily the hospital gave us all this but it would have been nicer from us.

In terms of pain relief. Our dd2 was born at 22 weeks +2 but was measuring 19 weeks so fairly small. I had an injection to stop her heart but gave birth naturally.

For me the induction took around a day (1 tablet then sent home, in the next day 4 hours from there) and labour was around 4 hours. In my head I'd told myself I'd already given birth to a 8lber with just g&a so I'd be fine. I think induction drugs make things more intense but also not having a baby to look after made it harder. In the end I had a pda (?) with morphine. I was pretty out of it in terms of talking but very focused on what my body was doing. It took about half an hour to wear off after my last lot.

I thought I'd tell you about induction just because I know in some cases of stillbirth after the baby dies you may not go into labour naturally so may be induced to lower the risk of infection.

If you don't have to be induced (I really hope not) I would imagine that you will be fine at home with g&a. I guess it also depends on her size and how far you get.

I am really hoping that's not the case though and you get to meet and spend a little time with your baby.

Sorry I forgot to say that my midwife and the doc both told me that I could have an epidural at any point. They had an anaesthetist available if I wanted one.

I think for me I chose morphine over epidural because it wore off quicker but they will make all pain relief choices available to you.

The best bit of advice I was given after I knew we would have the tfmr was to take whatever pain relief I wanted or needed. Often with live births there is an unspoken idea amount women that the less pain relief you have the better you are. Obviously this is rubbish anyway but really try not to let that creep in, you need to do it whatever way you find easier.

Have the docs given you a birth plan or idea of what they think will be better if your dd does make it to term? I wonder if the stress of labour increases the risk of babies with T18 dying during birth?

Sorry if you don't want to answer those questions. Please don't be offended, I'm not sure if I can word this right, but following you and your dds journey is helpful in my grieving process. There is a part of me that has always had questions about 'what if we'd made a different decision'. I really hope I've worded that right, the last thing I want to do is upset you.

Thanks Kitty. It is really helpful to hear about induction. If dd dies before term then we are thinking we would opt for induction partly to avoid infection and partly for dd to be in as good a condition as possible. The hospital have agreed in principle to induction at home in this case but I am not ruling out transferring in for pain relief if needed. This is our first so have no idea how I will cope

In terms of getting to term everyone has been really open so far to whatever we want. They are not at all prescriptive about care. About 40% of babies with T18 who get to term die in labour and while I think their usual practice is not to monitor and let nature take it's course they were open when we said we weren't happy with getting to term and doing nothing if dd is in distress. We are considering both the options of monitoring and intervening with caesarean if dd isn't coping or even elective cs at or near term and they have agreed on principle to that. The balance is between the risks of cs for me and any subsequent baby (though took 10 years and a mc for dd so who knows how likely that is) versus the chance of some time with dd after birth. At the moment I'm erring towards prioritising time.

Of course I'm not offended btw I'm glad if my story helps you. As I said before many of your posts have been helpful to me. There is no good decision in this situation. One if the things that is difficult about continuing is that there are a lot of assumptions that you are a religious, pro life sort of person which I am er not. I wish you so much luck in TTC dc3, hope there will be good news very soon.