Down syndrome and termination - support

[Rachellee0]

Hi I’m 25 and was pregnant with my first baby. My partner and I were over the moon and bought a new house in a panic to be ready for the little one. Unfortunately at 12 weeks they detected an increased NT, the bloods then came back 1 in 5 chance of Down Syndrome. We were then offered an NIPT test which also came back high risk - and later a CVS test confirmed it. There were also concerns of heart and structural problems which led us to decide on having a termination. I appreciate that this wouldn’t be everyone’s decision and it wasn’t a decision that we made lightly. It’s been 6 weeks since the termination and it is still as painful as it was then. I feel as though I am in a dark hole and can’t find my way out. Following the number of tests I’ve had, I was back in hospital this week having the same medical procure again as they found the termination was incomplete and it was causing me to bleed profusely. I’m not there physically or mentally and they have referred me to genetics counselling but it will take another 4 months on the waiting list. I’ve written this post as there’s support groups on miscarriages, still borns etc but I’ve struggled to find many people who have opened up about struggling with terminations for medical reasons. It’s a very lonely time and I can’t help but feel as though nobody can understand how I’m feeling. It would be helpful to know I f there is someone else on here who has gone through the same or they too could find comfort knowing they aren’t alone too.

Hi Rachellee0,

I'm glad I found you. I'm so sorry you are going through such a traumatic time. I am going through a similar experience right now and it is absolutely devastating.

I am currently 15 weeks. This is our second baby and we had almost given up on getting pregnant. I am 37. We were so excited and announced our pregnancy to everyone and our little boy who will soon be 4 is excited too. We thought all was great. Our screening results at the first scan came back with a 1 in 7 chance of our baby having Down's Syndrome. We paid privately to have the 'Harmony' test and the results came back on Wednesday of there being a 99.9% chance of the baby having Down's Syndrome, which as you know is basically a diagnosis. We are now having an amnio test on Monday to confirm.

We are absolutely devastated and I am finding it very difficult to just not cry. My world has come crashing down. I am so so sad for not only myself and my husband but for my little boy who is excited about being a big brother. Both me and my husband have decided that as a family we cannot cope emotionally or financially with bringing up a child with additional needs, especially as we have no way of knowing the extent of the child's needs. At this point I am completely broken and feel so empty. I am in bits typing this.

So with all this we too have had to make the terrible and horrendous decision to terminate the pregnancy and I feel so physically sick at the thought of it but I know that for us as a family it is the right decision. I am terrified of the proceedure and how I am going to cope both physically and emotionally. The sadness, pain and guilt is eating me up and I know this will be a terrible phase of my life.

After the termination I am planning on joining the Antenatal Results and Choices (ARC) forum for bereaved parents who have lost a baby following a prenatal diagnosis. It is a password protected and moderated forum just for people like us. I know whatever I say cannot take the pain away but I wanted to reach out to you and share my experience. There is some comfort in knowing that I am not alone.

Hello @Rachellee0

I am (in a funny way) pleased you've posted this thread. I had a TFMR 4 weeks ago (at 13 weeks) and I also feel very alone and like all the loss threads here are for miscarriage, etc. so I haven't really wanted to post in them. I did notice an entire section on babycentre for TFMR though, so I might post my full story there soon.

I am 33 and was also pregnant with my first.

Our baby had a megacystic bladder and due to the size and how early it'd been detected, they knew it was incompatible with life. We could only really decide whether to carry on with the pregnancy and let the baby die in utero or to terminate. I thought it'd be kinder to choose the latter option.

Then, when he was born, we also were told his intestines had started developing on the outside too.

My baby's condition was so rare that the midwife said she'd not seen it during her 25 years at work.

We're still waiting for postmortem results to find out if it was genetic or just bad fortune that baby didn't develop correctly. We're highly hopeful that it's the latter due to the sex (usually in boys, the megacystic bladder is caused by an obstruction during development. In girls, it's often caused by a rare genetic disorder). Then we'll think about trying again.

We've had to speak with the bereavement midwife this week who has liaised with crematorium on our behalf, which has kind of knocked me for six. But all the arrangements are made now.

I also have the worst migraine at the moment so I'm sorry if this post makes no sense or doesn't flow!!

Giving you a virtual hug xx

I havent been in your situations (all my kids were diagnosed with life long conditions after birth). It must be incredibly hard to talk about this in public & how you feel must change a lot throughout the day.

Hi @bowieandme.. I'm so sorry to hear what you're going through and that we're on similar paths. I wish there was something I could say that would console you in any way but I know too that there's nothing anyone can say. I too got the same 99.9% chance from my NIPT results and that was the most horrific moment of my life as it's basically the confirmation from my perspective.. they do however need to take a diagnostic test to be absolutely sure hence the CVS and amnios for us. What I can offer you comfort in and you're worried about the amnio is the procedure isn't as bad as what you think. Both procedures to my understanding are very similar- I was extremely nervous before mine but it really wasn't that bad and it's over in seconds so if that's something you're stressing over then don't. You'll be fine. If there's any questions you have regarding that procedure I'm happy to answer. In regards to helping you with feeling empty and devastated.. I can't give you an answer as I too am still broken. It's still a raw time for us both and I struggled most by feeling completely alone even though I had I best support network around me I still can't explain to anyone how I feel because they haven't gone through it and will never truly understand. But I signed up to ARC a few days ago and I'm completely overwhelmed by the amount of support I've had on there from all the ladies who have been through the same as us. We are all bound together someway by our horrible experiences, but it's a comfort to know we aren't alone and it's ok to feel how we are in a time like this. If you need to chat anytime I'm here. And I hope everything goes ok for you Monday xx

Thank you for posting @WildFlower2018 and I too am so sorry about what you've had to go through these last few weeks. As I said above, if you're looking for somewhere to talk to people going through this then ARC is a fantastic forum to go on. You just send them an email and a brief description of your experience and they send you like private log in details. The ladies on that forum are absolutely amazing and I can't praise them enough. They have been so comforting and understanding and offered me such kind words of advice, I've found it extremely beneficial. The ladies who work for ARC are also great and willing to offer support via email or phone should you need it. Have you been to see a councillor or anything since the termination? We've been offered genetics counselling but we're on a 4 month waiting list which is frustrating as if feel like in 4 months time it will be reliving through all the pain again not that it'll ever really go away. It's one on those things I don't think we'll ever get over, we just have to keep remembering not to beat ourselves up about it as we've done it for the right reasons. Hoping you get the right result from the post-mortem. Sending a virtual hug back xx

Haven't been in your situation but just wanted to give you a virtual hug

I’ve not much to say, but as a mum with a child who was born with severe heart disease, no cure etc many difficulties that lie ahead and sometimes regretting going for the transplant (only sometimes when I break and cannot cope, I love my girl and she is awesome but I hate her condition) I would have done exactly as you have. This may leave a sour taste in some peoples mouths but, if I had another child and they showed signs of having what my daughter does (we didn’t find out about hers until after she was born) or a condition such as Down syndrome that can come with a whole load of difficulties with their heart and lungs etc, I would not bring them into this world. I wouldn’t be able to do it and as much as it may sound selfish, I have two other kids to think of and cannot imagine dealing with another load of hospital appointments etc. I think what you have done is very brave and you’ve been honest with yourself and how you would cope. It will never be an easy decision but it was the right one for you and that’s all that matters.

I had a tfmr for Downs in 2011. It was the hardest time in my life. ARC was a lifesaver, we also got a kitten which helped. We now have a healthy 6 year old son and I rarely think about those dark times. Sending love and strength

Thank you all for your comments. It really means so much 💕

I chose to terminate a very high risk multiple pregnancy. There was a high chance of both babies being born disabled and I felt I didn't have the right to do that to my older DC's life - always coming last, living in the shadow of illness, perhaps growing up to be a carer. I don't regret my decision and I still have some lingering sadness but I have been able to move on and I now have a healthy baby. There is a thread for support after TFMR in the antenatal tests section here. Be kind to yourself.

@Rachellee0 Thanks for that reply, Monday was OK despite the emotion. The staff at our hospital are all so supportive, sensitive and professional which helps. The amnio didn't hurt at all. I made sure I couldn't see the ultrasound, I am trying to stay as detached as possible. I could be in the hospital on Sunday for the termination which I am starting to freak out about. Before it didn't seem real but now it does. I really hope I can get through it and it doesn't impact too much on my relationship with my husband (he is very supportive and reassures me we are in this together) but I can see myself being affected by this quite deeply. I will be on that ARC forum and I will hopefully get some counselling. I am actually a trainee counsellor myself but that is not helping me much right now. Thanks again for posting.

@QuackPorridgeBacon You sound very brave to me and thank you for commenting, it means a lot to hear you say those words.

@Chrisinthemorning I have also thought about getting a kitten in the future, thanks for your comment

@CountessVonBoobs You make some very good points that I also have considered in my decision, it really helps hearing other people reiterate my own thoughts and beliefs, thanks for your comment

It never goes away but time has helped you will make it out of the black hole eventually! I had a TFMR the week before Xmas - my baby boy had downs and Myotonic Dystrophy ( which can be devastating for babies born with it) - I had support from my family and DH's family and feel like I'm in a much better place now - I know we made the right choice for the boy, us and my healthy DD. The due date was hard especially as my SIL was due the day after me and she had a healthy baby (which I am happy about I have a lovely niece and I wouldn't wish this on anybody?') it does make it hard tho as we should both have had babies!!

I know this post was a while ago, but all your comments have really helped me get through the last week. I had my first scan Monday and by Friday was having a termination. It’s been the worst week of my life. All my dreams and hopes have gone and I am left feeling empty numb and sore.
I know it was for the best and the right decision for our poor little baby who didn’t have a chance.
The Hostpital staff were amazing kind and caring. I will start counselling and look for help in ARC

Sending love @kyliechaplin - have recently been through the same. Such a dark time but passing time does help, you will start to feel better in time. Hold on xxx

Thankyou @Kate544

Sorry for hopping on here, I've just had the results today and am waiting for CVS and then a termination... I had no idea how many people go through this. I will join the ARC forum once I can.... it was also recommended by people I had the harmony test with.

Sorry to piggy back on this threat but I see it’s been recently updated.

I am 25 weeks and found out on Friday our baby has Di George’s as well as a heart condition that we already knew about.

I am 25 weeks because there were various mistakes at the hospital with our scans. I’m now in the position where I don’t know if we have a choice, and if we do the surgical option is ruled out. We are meeting the geneticist on Tuesday.

I think I am going to be in the position where I will have to argue for the right to terminate my own child. I am so angry as well as upset.

My husband and I I don’t think 100% agree yet that this is the best path, but I am almost sure that it is the best for me and for the baby.

It’s such a rubbish situation. I wish I could just wake up from it. I’m glad in a way I found people going through similar situations.

It’s 5am in the morning and I haven’t been to bed, I found out today my first baby has a 99% chance of down syndrome. My world has just shattered into pieces and my heart is literally broken. All I was thinking about was gender reveal, painting the nursery and baby showed never for one minute did I even think this could happen especially when the 12 week scan came back normally. To make things worse I was told this information on my own on the phone in the hairdressers, I literally fell to pieces and now can not stop crying. I’ve got to go for the cvs test tomorrow but after 2 blood tests one equivalent to the harmony test is almost conclusive. I don’t even know what I’m asking you guys but I guess who do you even begin to digest this?? For us the only option is termination and I feel this will break me as a person.

@Rachellee0 I'm so so sorry, I'm sending virtual hugs. Xx