heartbroken

[lbmum]

I am 15 weeks pregnant with our third child, much wanted and much loved. While I was on holiday at the end of August we received the dreaded phone call saying that we were high risk (1 in 17) for DS. I was devestated and cried for a whole week until we went for the CVS. At this point we knew we would continue with the pg and guessed we would rather be prepared than not.
The CVS went well. The scan I had lasted one and a half hours and the doctors were confident that all was well. Our baby has a nose bone, femur length normal, heart normal, nuchal measurement 1.9mm. However, a week ago we received the devestating phone call that no parent wants to receive, our baby has tested positive for DS. Our consultant has told us that our baby is in a 2% minority where they look fine on the scan, most are picked up by a scan. It was my bloods that raised the alarm.
It wasn't until our world came crashing down around us after receiving the news that we started to consider terminating this pregnancy. I am now, a week on, almost at that point but we still have sudden moments on whether we could make a go of this. We always knew that a third would put a strain on our emotions, finances, state of minds etc but now we are faced with even more difficulties than we thought we would 'get by' on. How stupid we were to assume that all would be well. We told our chilren after the scan (6 and 4) and their reactions were precious, they were in love with their sibling from that moment on! We have now told them that our baby is not well and our DS of 6 prays every day that it will get better and be born. It is heartbreaking. We know from all the research that children with Down's are beautiful, much loved individuals but we worry beyond that, when they are adults and the fact that our children will become carers or at least have Power of Attorney issues to deal with.
We are now almost at the point of going for termination. This is not an easy option. I feel sick at the thought of killing our child, that we will need to tell our children it died when we killed it. I feel guilty that so many people would be appalled at what we might do, after all with a ds diagnosis it does have a chance of life, not like Edward's or Patau's. I have found myself in my grief almost wishing the decision would be taken out of our hands, terrible thoughts. To make it worse we are Christians and we do believe that God has blessed us with this little life for a reason and yet we are going against his will in terminating. Our Christian friends will never look at us the same again but I say this and mean this.....NOBODY can understand what this is like until they experience it. The worst grief, sadness, despair you can ever imagine. We are grieving for the loss of what we thought we were going to have and how much different it all is now. We will not be having a termination and taking the decision lightly, we have cried non-stop for 7 days and I don't know how I will ever feel happy again. We still have moments where we think what it would be like to go ahead, hold our newborn in our arms, give our children the sibling they are so desperate for, we know though that is just a short term vision and that long-term it will be so much harder. Good times too, but heartbreak, fear for the future.
Is there anyone is my position? I feel so alone, nobody posts about this much online in fear of being judged or abused by pro-lifers who have never been in this position. Please do not judge me, my heart is breaking.

Hi lbmum I'm so sorry to hear the position you're in. I had a termination for medical reasons 4 weeks ago today and it was the hardest thing I've ever done.

Similarly to DS, our baby had a very rare chromosomal deletion which can have very varying implications - from fairly mild to very severe. It was a heartbreaking decision to make, but I can honestly say that, although I feel bereft and sad that we were put in a position where we had to make the choice, I don't regret the choice we made at all.

My mum's side of the family is very Christian and I was worried about their reaction but they were very supportive. I can totally understand why you'd be worried, when I tell anyone, even friends who I think would not judge me, I find myself bracing for them telling me they believe I made the wrong decision, it is hard. I've seen ladies on here who haven't told anyone, though, or just simply explained they 'lost' the baby without going into details.

Ultimately it's your decision and I hope you can make one which you're comfortable with (hard as that may sound). It helped me to speak to the genetic counsellor and to know that most people in our position made the same choice, so we weren't alone. I have nothing but admiration for the women who raise SN children and feel very humbled by their courage, but I know it's not something I could have chosen to do myself.

Best of luck with your choice. Feel free to pm me if you want to ask any questions etc. Will be thinking of you.

Piz

oh lbmum reading your email makes me so sad - am so, so sorry you are doing through this.

i have had a termination too so know some of what you are feeling, although in a way it was easier for me as the diagnosis was terminal. there are many women on here who will be along to help who have been in your position and terminated. please try not to feel so bad, you are obviously an extremely caring person making a decision no one should have to make for the good and well-being of your family.

don't let anyone pressure you either way, as you say no one know's what they would do until they are put in your exact position. just follow your heart and take care xxx

i way just reading pizdets lovely response and saw she mentioned that most people in this position make the decision to terminate. if i'm correct 91% of people with a DS diagnosis do terminate, so if you do go down that route you would be with the majority. x

lbmum, your post speaks so much to the rollercoaster of hope and despair we go through when we are told there is something wrong with our baby. I ended my pregnancy two years ago when we were told our baby had Down syndrome. All those things you mention we thought about, all those emotions you speak of we felt. I too wished for a miscarriage.

In the end we decided to terminate the pregnancy because of the long term uncertainty of the life our baby might experience. It was and still is the hardest rawest bleakest time of my life.

It does help me to know that my baby is with God, and every time I go to church I light a candle and pray for him.

I would never judge you it is a truly awful position to be in I am currently pregnant and was advised to terminate not only for health implications to myself but due to issues surrounding the likely affect medication may have had on my baby I will not know anymore until my 20 weeks scan. I and this is only me personally have decided I will not terminate no matter what happens. I only mention this to say i understand But There are no right or wrong decisions here only what is right or wrong for you. the rollercoaster does subside a bit in my experience anyway and in the wake of all the tears and panic I realised what I wanted to do. Sending strength and hugs whether they are mumsnetty or not . X

"To make it worse we are Christians and we do believe that God has blessed us with this little life for a reason and yet we are going against his will in terminating. Our Christian friends will never look at us the same again but I say this and mean this.....NOBODY can understand what this is like until they experience it. The worst grief, sadness, despair you can ever imagine."

I am speaking to you as a fellow Christian. I have been in the same position and we decided not to terminate. It wasn't even an option we considered. (As it was, DD died before term.) Please don't assume all "pro-lifers" are just pro-life because they've never been in this position.

I really do understand the grief and sadness and despair of getting bad results, but I'd really encourage you to speak to people who have children with Down's. I can understand the sheer overwhelming devastation and panic, but the reality is often very different. There is so much support available to parents and then to adults with conditions like Down's to be able to live independently.

There is still time for you both to come to a decision, one that you can both be at peace with. As Christians, we know that God will give us the grace to deal with whatever he throws at us in life, but know that if (whatever you decide to do) you someday feel that you have made the wrong decision, God, through Jesus, will forgive us and we can be right with him.

It is so difficult to know how words on a screen come across without the tone, but please be assured that the intention is not to judge but to encourage you. You'll be in my prayers.

I really wanted to post something Ibmum as this could so easily be me. I went through all this last week, having had cvs for a 1 in 12 risk (based on bloods too). We were blessed with a clear result. But having spent 5 days facing the prospect of making a decision about termination, and these emotions are so fresh in my mind, I absolutely identify with every thing you have written - and I am certain if our results had been different I would have been writing a very similar post.

My biggest fear was downs, rather than patau or edwards, because the decision to terminate would not be clear cut. I too am christian, and come from a very christian family, and the guilt of the prospect of terminating for downs was immense. It is also my 3rd pregnancy, and I was also hugely overwhelmed at the prospect of the implications of going ahead with the pregnancy on my children, and on their future. And I was also hugely concerned about how raising a child with downs would impact on my personal and mental health, as I have moments when I hugely struggle with 2 healthy children.

I find this hard to write, as I am also terrified at upsetting people who have raised children with downs, and I know going ahead with the pregnancy is an immensely brave and commited choice. But as I contemplated a termination, I almost felt that in the short term, staying pregnant was the easy way out. Termination felt it would be so much harder as it went against all my natural instinct. Thats just how I felt at the time, when contemplating it. But I am fairly sure I would have had the termination though , although as you write, no-one can say until they are in your position.

I'm really not sure how posting this helps you, but I just wanted you to know that so much of what you have written made sense to me.

Sending you lots of love and prayers xx

Thank you to all of you who have replied to me, they all give me hope that one day we will get through this, whatever path we take. This is such a terrible place to be in and we are so scared, whatever path we take. Thank you all. x

goosey123, thank you, it has helped a lot. I am so pleased for you. That awful time when you get that phone call up to the test and then the result is all so terrible, nothing can describe how aweful it is. We received the news that we were at high risk when we were on holiday in France, I was in the caravan on my own at the time and have never felt so alone. I phoned ARC, a charity that deaal with people who have just had a diagnosis and they said that they have had many Christians and Catholics who have phoned them and gone through with a termination. I guess the brunt of it is you always feel so alone. I still cannot help but think how differently it could all have been. So pleased your results were clear, what an amazing feeling. We had hoped for that, our scan before the CVS was great and the docs said all was looking good. I have since found out that our baby is one of 2% who do have a nose bone, correct femur length, normal nuchal measurement. For a while we had a brief episode of hope but that call came at 6pm last Thursday and I broke down in front of my poor children. The pain that they know about the pregnancy is what I find most difficult to cope with.

I hope that you can find a way to be at peace with whatever you decide to do. It is up to you how much information you share with other people.

Hi Ibmum,
I understand what you have been through this past week. We found out at 21 weeks that our precious little girl has down's syndrome. For us termination was never an option( a very personal choice) and I am now 30 weeks pregnant and looking forward to meeting our beautiful little girl. There was a bit of a worry that she may have moderate avsd in heart but on last scan by cardiologist, it looks very small and she may not need any surgery, Obs consultant scanned her a week later and couldn't find hole at all and said that some heal themselves during pregnancy. We already have a son of 5 years who we told about pregnancy very early on. If you have any questions about contiuning pregnancy after diagnosis, feel free to ask.
I know I will probably get shot down for this but can I just make a plea to those who bound about statistics about 91% of women who have diagnosis of DS terminating and that if this is decision taken then they will be in majority. This feels almost like saying termination is the right thing to do in this situation and is upsetting to read. I am not a radical pro-lifer but believe in woman's right to informed choice and would like to be able to offer advice and support from the 9% of us who are continuing with pregnancy after diagnosis to ensure a balanced view from both sides of the fence. Sorry if this upsets anyone.

I dont think that your post could upset anyone realnappies. I've read the odd post which almost seems to be judgmental the other way too. Yes its true people with ds are prone to some health conditions but they are at lower risk of some (addictions for example). My friend had a baby who died of a heart condition :-( but he was chromosomally normal.

FWIW OP I think its a very difficult, traumatic choice. I never had nuchal screening because I was too scared to face up to the possibility of having to make that decision.

My mother is always positive about ds and in the past she had a few friends with it.

If I can speak for katiecubs, I know she wouldn't be saying there is a right or a wrong decision here.

Because there is so much silence about terminations for medical reasons, it can sometimes help to know that you are not alone in your decisions. That goes both ways. But in the end, you have to make the decision itself alone.

I am so sorry you are going through this - I would certainly not judge you for whatever decision you come to. You are doing all the right things, you are arming yourself with the facts, considerin the options, i really hope that whatever decision you make for you AND YOUR FAMILY, that you manage to find peace in your hearts. No one can tell you what to do, or what they would do, they are not you. God will not judge you - i always wonder about things like this, about intervening medically in things, and i think that if God didn't want us to be able to make these decisions then he wouldn't have equiped us with the option. So, whatever you decide will be OK with God, he will know you did what was best and is guiding you in your decision.

I'm sorry, OP, that you are faced with this decision and so many others are too.

I would just like to add one thing: You never know what the future holds. I gave birth to a perfectly healthy little boy in 2008 who now has a diagnosis of ASD, plus ADHD and possibly a range of sensory issues. I wouldn't have chosen this path, but by GOD, I wouldn't change it or him.

You never know what the future has in store. I have a DS uncle and he's way over 50 now and still leading an independant life. There are some success stories out there.

I am NOT (and never would) say do this or do that. Only you know what is right for you and your family.

You must do what is right for you and your family and I am sorry that you have to go through with this. As once says, you never know what the future holds but at the point you are in you do have the opportunity to make a choice about you do.

I know there are lots and lots of heart warming and positive stories about families with children with DS etc however what we rarely hear is from families who do struggle to bring up a child with DS, not everyone can access the support that is needed and some families do find it very, very difficult to cope but they are hardly likely to come on to a website to discuss those feelings.

Good luck whatever you choose to do.

My DD1's best friend has Down's Syndrome. She's 7. They are quite evenly matched in terms of how verbal they are, their physical abilities, and cognitively.

They can be quite naughty together. It's was a delight to see the shocked faces of people when they happen to meet in the Doctor's Surgery, because their eyes met, and they called each other's names as if they hadn't seen each other for a year, as they rushed over to each other to give the warmest hugs.

They both go to Special School. My DD had always gone there, but her friend started at Mainstream first, before realising that Special School would give her the best education for her needs.

The reason I'm posting this, is to say that my DD, who is really just like the girl I know with Down's Syndrome, wasn't diagnosed with SN officially until she was 2 years 9 months old. There were signs for me, as a parent, but I was a first time mum, and was told I was neurotic. DD1's friend was diagnosed at birth (not before).

It feels a bit clumsy to say it like this, but I guess what I'm saying is, I didn't get the 'chance' to terminate DD1's pregnancy. I can't tell you for certain what I would have done (although, admittedly, I refused the triple test because I wouldn't have an amnio, and nuchal wasn't available then anyway), but I am so glad I didn't have that option.

You are right. Life with a child with SN isn't as simple as I had hoped life would be. I have faced challenges that were unexpected. I, too, am a Christian, and I always thought that I'd be someone who would help families with difficult circumstances; it's been a big adjustment to accept that it is my family who needs that help right now.

Having said all that, I believe my children are richer for having DD1 in their life. They are now almost 7 (DD1), 5 and 3½. The hardest thing for her sisters, is trying to understand 'why DD1 has a hard brain' and 'why can't DD1 hop'. But, already, they have learned tact beyond their years, because I am constantly having to stop them from pointing out that DD1 hasn't said something correctly, etc.

If you met DD1, she'd make you laugh so hard. She struggles with many areas of life. But she has so much self-confidence, and humour, and has absolutely no social inhibitions. In fact, if everyone in Britain was like her, we'd have all the leaders of the world packed into one country.

I do hope you find peace with your decision. A decision only you can make. As a fellow Christian, can I suggest that you take a few minutes to just sit. Try and relax. Deep down, do you want to finish this now? Do you want to terminate? Or are you scared of continuing in case you get it wrong? I hope, whatever the result, you'll find peace in your decision, because whatever you do, your life has changed.

Take care x

I am a Catholic and I really struggle with my church's black and white view on these matters. I have lost three pregnancies, and I guess you have to say that those babies were taken for a reason, although I strongly suspect not all of them were (i have blood clotting problems). I'm not putting this well. But I think if mother nature is allowed to make a judgment about which embryos make it to term, so should we be able to. Or we should be very careful about judging those who have to make that choice.

I also strongly think that God speaks to you through your conscience, and there seems to be a voice there that this difficult decision might be the right, although painful, one for your family.

realnappies it was me who posted that stat - i'm really sorry if it upset you, that really wasn't my intention. I don't for one minute thaink terminating is the 'right' thing to do - the only right thing to do is what is best for the person and their family in that situation iyswim.

I posted the stat in support of the OP, it is often told to people via councellors at the hospital or elsewhere when they have expressed a desire to terminate alongside feelings of guilt. I guess the problem is that in real life it's not something people talk about and going down that path can make you feel like bad person (for want of a better phrase) so being told this can help you feel less alone.

Anyway i hope that helps to explain it a bit, i have not gone through this exact dilemma myself as my DD had a terminal diagnosis but having found so much support in this section i really appreciate what a horrible situation it is to be in and i have total respect for the choices made either way. I wish you all the best in your pregnancy :)

p.s thanks ghislaine x

Thank you realnappies, I don't think any of us are in a position to judge anyone else and yes, you are right that when facing an awful decision like this the statistics help you to feel that you are not alone. It is such a taboo subject that it is very rare to find support about it and it does help to hear the statistics, thank you. x

whiteshoes, thank you for your take on our faith. I am inclined to agree with you in that it may not be the path God wants us to take but he knows our hearts are breaking over this and can feel our pain.

You are in an extremely difficult place right now, but with time whichever route you take you will carry on with your life and things will calm and settle. I think you should be making this decision based on what you both deep down feel and not on other peoples opinions and judgements. You are always going to get people with views on this matter from different places on the spectrum.

My ds1 has ds which was diagnosed at birth and now nearly 9 years down the line I do feel so relieved that it wasn't picked up antenatally as I would have felt as you do. I didn't have a choice, I had a small baby that needed me and that overrode everything else. I was absolutely devastated, but time is amazing and the shock has gone and our lives would not be the same with out him.
We have had three more dc and he is very much the big brother and just one of our gang. Our ds2 is only 14 months younger than him so almost 8 and he understands at an appropriate level for him about ds and he certainly would never wish his big bro didn't have it. For the children there isn't the same 'disappointment' and striving for 'normal' that we have. Ds1 is very much part of my life script now but was a huge surprise. He is well and thriving.

Someone once told me that if they handed us our 'normal' babies and told us all of the potential problems they could have in life (as they do with our ds babies) we would be scared witless too. And that is so right, so far in the last 9 years everything I have worried about has not been a problem and the things I had not considered have surprised me. Ie. All the boys in his mainstream school basically clambering to be his best mate and sitting with him causing the others to be jealous. Ds2 only want to sit with him at lunch and isn't mixing well, as opposed to not wanting to know him!!
Yes he is delayed in most ways but not his sence of joy in the world and ability to natter for the new supermario ds game!!!!

Anyway lovely if you need to pm me you are more than welcome. And if I (as parent of a child with ds) am not going to judge your decision whatever it may be then I really think you should not let other peoples views cloud your decision.

Best of luck for the future. X

Four4me, thank you. What a lovely, heartwarming and positive post. Thank you so much. xx

Four4me what a lovely, helpful post for lbmum - your DS sounds just lovely :)