Devastating news at 22+3

[ladystardust123]

Hi there,

I haven't posted before but have been a mn reader for a while.

This is my first pregnancy and I am currently 22+4. Yesterday, my dh and I received the awful news that our baby has not developed properly and the doctors suspect that it has a chromosomal abnormality. They think it could be Edward's syndrome or Patau's syndrome. I don't really know much about this and am too scared to search dr google at the moment. We were told that if our baby has one of these, they are unlikely to live beyond a few hours after the birth. The best case scenario is a chromosomal abnormality like Downs but with several other severe disabilities - the brain, for example, is 5 weeks behind in its development.

So this leaves us facing up to the heartbreaking task of ending our much wanted pregnancy.

I am so scared about what is going to happen. I've never given birth before and this is the scenario I used to have nightmares about. If anyone who has gone through this has any words of advice or support, they would be much appreciated.

We have told our family and work colleagues. We need to tell our friends and I'm just dreading this, especially as we have several close friends who are also pregnant.

I just can't believe this has happened. We had a scan at 20 weeks which showed everything ok but they couldn't get a head measurement. The sonographer said this was because of the position of the baby so they needed to reschedule. In retrospect, it was clearly because things weren't quite right.
After worrying about early miscarriage, I had just started to really believe that we were going to have a baby and had just handed in my maternity leave form.

My dh is a rock and I am so grateful to have him but I just can't bear the thought of what is to come. I know I have to be strong and get through it one day at a time but it's so hard, especially when I feel my baby moving and my bump getting bigger.

I would be so grateful if anyone else can talk about their experiences. I don't know if there is a support thread for women going through this.
Thank you for reading.

[CiderwithBuda]

You poor thing. I am so sorry. I don't have any experience of what you are going through but there will be people on here who do and will be able to give you some advice and support.

[MrsKitty]

I have no advice, but just wanted to say how sorry I am for your loss. My thoughts are with you, and I hope you find the support to help you through this.

[ladystardust123]

Thank you for your kind messages.

[tanfastic]

I'm so sorry to hear that, how awful. There are lots of ladies on here been through similar who will come along soon to give you some advice. Have a hug from me in the meantime :-)

[BartletForAmerica]

I'm very sorry to read this.

We discovered at our 13 week scan that our baby had significant problems and would not survive and were offered a termination. We decided to carry on with the pregnancy until she died and I am really glad we did. We had a series of scans to check if the baby was still alive, and then at 18 weeks, she had died so we went in to deliver her.

I am so glad that we did it that way as it gave us an opportunity to grieve over the results, but also to see her on the scans/hear her heartbeat, knowing that I'd done my job in keeping her safe and warm for as long as she lived.

Delivering her was hard, but the midwives were so, so kind. The anaesthetist came as soon as I said I needed more pain relief. We were able to spend a short time with her body afterwards. It was difficult but precious. We have a few photos of her as well and the midwife did hand and foot prints for us.

One organisation recommended to us, although I didn't use them in the end, was ARC:

www.arc-uk.org/
Tel helpline: 0845 077 2290 or 0207 713 7486 from a mobile phone

[womanlytales]

I am so sorry to read this.
I had a late miscarriage at 22 weeks on Dec 20. At the 20 week scan everything was fine. After a wobbly start of the pregnancy, I too felt that post this scan things were looking up and I was in the 'bloom' stage at last.
However all of a sudden on a Monday morning, I got pains, my cervix dilated and I delivered my baby the following morning. It was sudden and there was no explanation except for incompetent cervix. I am waiting for the follow up appointment to learn more of what went wrong.
This is an awful, awful thing to happen to anyone. However when I read your note I wanted to share my experience of the delivery - - I was not prepared and had no idea how to breathe or push or anything since it was my first. The nurses and doctors were kind and helpful. I found that despite my lack of knowledge or experience, my body was fit and knew what to do. Also the recovery post delivery was swift and natural. Emotionally I hated my body for doing this ..but in hindsight, it is a positive.

[ladystardust123]

Thanks for posting and I'm so sorry to hear your stories. It's just awful. It's so sad to hear of other people going through such tragic events. Thanks for the link bartlet.

Thank you for mentioning your delivery, womanly, I am so scared about it but I hope I am like you and know what to do instinctively. I want as much pain relief as possible and I hope it doesn't take too long but I don't have a clue about these things. We had signed up for classes but I suppose maybeit's better that this has happened before they started or before we started buying lots of baby stuff.

How long did it take before you felt physically back to normal? I just don't have a clue and I haven't met with the consultant yet but I have so many questions. Will my milk come in? How long will I bleed for? I guess I'll start writing these down so I cn ask the doctors.

Anyway, after a terrible night, I feel absolutely wiped out. Going to wach something mindless on telly with dh and try not to think too much.

Thanks for answering.

[womanlytales]

I am so sorry ladystar for what you are going through.
To your questions:
Physically getting back to normal takes about 4-5 weeks but it's a gradual process.
For me (and it varies for everyone), I had bleeding for about 2 weeks and now have on & off discharge. I went back to work after 2 weeks but easing back into work - ie, not expecting to be 110% every day. I take the tube to the office and back - most days I am allright. However I need to be careful not to strain my body or else I have pain in my back and hips. Now and then I also have pain in my tummy area - not sure what that is. I also am going in for a massage tomorrow - I wanted to start doing that after the bleeding stopped.
My short term marker is 40 days (roughtly 6 weeks) after which we're off for a 2 week holiday. At this point I hope to resume regular exercise. My long term marker is 3 months by which time I hope to be back to 100%

[sleeppeacefullybabyboy]

Im so sorry you find yourself in this situation. We found at the 20 week scan our baby was sick and sadly had to end the pregnancy 8 weeks later as his condition deteriated. This was a few days before christmas in 2010. Its the worst decision you can make in your life. I was in shock for a long time (about half a year) before it actually sunk in my baby was never coming home. My life support has been ARC and SANDS also, babycenter has a helpful thread on termination for medical reasons.


I still struggle now but the days are less difficult to deal with.

Im thinking about you and hear if you need to take or have any questions feel free to pm me.xxx

[Jules125]

I'm so sorry to read about this. My circumstances were different (I had a stillbirth at 26 weeks due to severe pre-eclampsia) but I can reassure you that women having stillbirth are normally offered a lot of pain relief (the doctors sadly don't have to worry about drugs affecting the baby), and I'm sure this would also apply in your circumstances. I had so much diamorphine I scarcely remember it being painful. Your actual delivery will most likely be staightforward as your baby is still very small, its the aftermath and leaving hospital without your baby that will be so tough. My thoughts are with you xx

[FriendofDorothy]

A friend of mine was told at her 20-week scan that her child had chromosomal abnormalities and they suspected Edwards syndrome. It turned out that she didn't and she had something called CHARGE syndrome. She is 3 now and has lots of problems but is an absolute delight. It's hard work for their parents but they do a brilliant job. I am not sure there is any easy answers to this one.

[ladystardust123]

Thank you so much to everyone who has posted. It is just a horrendous thing for anyone to go through but reading your messages has given me some comfort that people can and do get through this.

I've had a look at some of the links which has been really helpful. The forum on babycenter, termination for medical reasons, particularly (thank you sleeppeacefully).

We are taking it one step at a time and meeting with the consultant tomorrow with things likely to happen on Tuesday and Wednesday this week. Right now, it's a bit of a rollercoaster of emotions and I go from feeling quite calm to being in tears without warning.

I am so very sorry that so many people have been through this.

[birdofthenorth]

I'm so sorry to read your heartbreaking news. I am praying for you.

Make sure you get the info you need now about all the options for ending your pg with as little trauma as possible. Let yourself grieve. Take as much time off work as you need.

I'm sorry you've had such heartwrenching news when of course you imagined things so differently.

[CointreauVersial]

My sympathies - what an awful thing to go through.

A good friend of mine was similarly diagnosed as carrying an Edwards Syndrome baby. She and her DH actually decided to go though with the pregnancy, knowing that the baby wouldn't live long. Her daughter survived for only a few weeks, but throughout her short life she was loved, cuddled and cherished. She was at home when she died.

Carrying the child to full-term was a hugely brave decision, but my friend said it gave her closure, to leave nature to take whatever course it chose. She has cherished memories of her first child, carries her photo everywhere - and went on to have three healthy children.

Whatever you decide, wishing you strength and peace......

[ladystardust123]

Thank you again for your messages.

We met with the consultant again yesterday and had another detailed scan. We found out that we are having a little boy but that he has so many problems. The front part of his brain hasn't developed at all and other parts of his brain are all wrong and should be different sizes. Then there are lots of funny things wrong with his body too. We won't have a diagnosis of any syndrome for a while but his brain is so badly wrong that diagnoses don't really matter right now.

The consultant was very kind but he said that we could either end things now or we would be switching off a ventilator in a few months time, if he made it that far. I know some people will disagree with our decision but we have decided to end things now. My heart is breaking but I am trying to think that I am taking away and feeling the pain that our little boy would feel if he was born.

There is a thread on the babycenter forum all about what people regret and are thankful for when they have to go through this. It has really helped. We have named our son and we have bought a blanket for him. We have bought two tiny teddies so he can have one and we can keep one. I feel that even though it is unbearable right now, these things will help in the future and I will want our families to acknowledge our son and use his name.

I am going in to hospital this morning and I am so scared. My dh is amazing. I go from feeling calm and then I just sob at the fact that we have lost our little boy that we wanted so, so much. We have had lots of messages of support and it is the really kind ones that make me cry.

I have to get through the next day or two and then I can start to heal.

I am finding it helpful and cathartic to post here. I hope that in the future I will be able to give support to others who are in this nightmare situation, like those who have posted have done to me.

[womanlytales]

My thoughts and prayers are with you ladystar - You are tremendously courageous in what is a heartwrenching time. Big hug.

[MrsRudyRudpoo]

Hello ladystardust123. I couldn't read this and not post - i was in the same situation as you almost a year ago. I am so sorry to hear this sad news.

We were told at the 20 week scan that our little boy had problems with his lungs and heart, and though he may make it to full term, he would die shortly after bith. We took the agonising decision to end the pregnancy at 20 weeks.
I am glad you have lots of support but thought I would let you know what happend, perhaps it will help. My son was born at 21 weeks. I had oral tablets at the hospital and then had to go back on to the delivery ward 48 hours later. I then had pesseries inserted. At this point the pain was managable with cocodomal, but as this progressed i was given some stronger pain killers. Please take all the pain killers you need as the mental pain is so awful that if you can take of the edge of the physical pain you should. We went into the hospital at 9am and he was born just after 5pm.

We took a blanket to wrap him in and held him. He was perfect but i just want to let you know that the baby's skin will be a lot darker than a full term baby would be, just so you are not unprepared. The hospital took hand and footprints of our son and took a photo. I wish now we had taken photos of him, as we only have the one they took which i treasure, but i didnt feel up to taking photos at the time.

We had a service at a crematoriam a week after. I have had couselling to deal with the loss but will never get over it, it is true what people say, that you just learn to live with it.
Please let me know if I can help if you have any questions from someone who has been there, I am so sorry that someone else is going through this. xx

[ladystardust123]

Thank you again for posting. I am home now and slowly coming to terms with what has happened in the past week.

My experience sounds very similar to yours MrsRudy. I really appreciate your kind words and it was very helpful to read what you had written before I went in to hospital.

I went in on Tuesday lunchtime and had a procedure to stop his heart. I was pretty heavily sedated and didn't feel much. The journey to the hospital was the worst part and my dh and I had to pull in at the side of the road so we could just sob.
I went up to the labour ward and the staff were excellent. I was given the pessaries and nothing happened fom 4pm till 4am. The pain was quite bad but I had taken lots of morphine which helped. At 6.25am, I felt like something was happening and he was born at 6.40am. The delivery did not hurt at all.

My dh and I spent lots of time with him just after the birth which was so precious. I had been worried about seeing him but he just looked so tiny and perfect. His head was so much smaller than it should have been but he was just perfect. We were able to call him by his name and tell him we loved him and we would never forget him. We took lots of photos too. The midwives took him and cleaned him and dressed him in a little hat and blanket and we were able to spend some more time with him.

My mum also met him which really helped. Knowing that someone else met him and not just me and dh will help I think. He was her first grandchild too.

I am back at home now and am emotionally very wobbly. I haven't slept well and I just can't help crying. My boobs are sore with milk coming in which just makes it seem even more cruel.

I just can't stop thinking about my little boy. I want to apologise to him for doing what I did, though I know deep down it was for the best. He wouldn't have survived at birth and the midwives and consultants said it was likely that he wouldn't have made it to full term.

I just feel so sad. Writing this helps a bit though. I do take some comfort that other people have got through this but it is just awful and horrendous and I wish that none of us had ever felt this pain. I feel like I have a weight in my chest that I can't get rid of.

The SANDS info that I was given contained this poem and it made me cry so I thought I would share it (some of you may already have read it)

A butterfly lights beside us, like a sunbeam...
and for a brief moment it's glory
and beauty belong to our world...
but then it flies on again, and although
we wish it would have stayed,
we are so thankful to have seen it at all.


Once again, thank you so much for sharing your stories and for reading mine. It has helped enormously x

[LiamsMummyJaz]

I am so so sorry. I cannot begin to think how you are feeling. I have no advice for you

[Moominsarescary]

I'm so sorry for the loss of your baby boy

I lost my son in September at 20 weeks due to incompetant cervix, they tried to place a stitch but it failed and had to be removed which caused my waters to break. My cervix then shut again but my sons feet were stuck in my cervix so we made the decision to have pesseries to open the cervix and he was born 12 hours later

I've questioned my decision many times over the last four months, I've also thought of every what if, what if his lungs had managed to develope, what if he managed to move his feet out of the cervix . Deep down I know I made the right decision for our son but I think it's normal to feel mixed emotions when grieving.

All I can say is take one day at a time, some days I wake up and i think, today will be ok, other days the pain feels like it did the day we lost him.

We have a memory box with pictures, things we bought for him. The thing I've found realy helpful is being on here andtalking about it. In rl not many people know it happened, and I think many of them feel uncomfortable talking about it.

Xx