Our Edwards' Story

[Missingmydarling]

I’ve name changed for this so it isn’t linked to my other posts.

I’m writing her about my Edward’s diagnosis and termination in the hopes it might help someone in some way. I’ve broken it down into different sections as different bits may be useful to different people at different stages. If anyone wants to ask me any questions I’m happy to answer and I’m sending anyone in a similar situation so much love.

Combined test

My first born had really low risk screening results including 1/100,000 for Edwards/Patau’s which is the lowest you can get so I wasn’t worried about the screening at all. We were thinking about telling wider family at 12 weeks but then I remembered about the screening and decided to hang on a few days just in case. I’d been having morning sickness (though slightly less than with my first, though much more tiredness) and we had no reason to think everything was wrong.

Our 12 week scan had shown exactly the right growth and no notable issues.

I got a phone call from a screening nurse the Thursday after my combined blood test and scan on the previous Friday. She explained my results for Edwards’/Pataus’ were 1 in 4. Anything worse than 1 in 150 was considered high risk. I was so shocked. I went to work as normal even though all I wanted to do was cry and research. I kept telling myself there was a 75% chance everything would be ok. We saw the nurse later that day and she explained we could have a further blood test (NIPT/Safe test) which had no risk to the baby) or have invasive testing – CVS or wait for the amniocentesis which had a miscarriage risk.

We decided to have the NIPT blood test which she did then and there. Afterwards I did a lot of research about the reliability of NIPT. Though it is said to be 99% accurate I think this means it will pick up 99% of Edward’s cases. There is a reasonably high false positive rate (around 20%-40% according to some sources). A key cause of this is something called confined placental mosaicism where the abnormality occurs after the baby and placenta have split so the baby is unaffected but the placenta still gives off markers for the chromosomal issue. This is more common in some abnormalities than others.

The nurse had also given me my specific figures for certain hormone levels. These were 0.13 MoM for papp-a and 0.24 hcg. Nuchal fold for the baby (NT measurement) was 1.6mm (or 1.18 MoM). This measurement is very normal but the first two aren’t. MoM works a bit like centiles with 1 being average. I asked the nurse to find these measurements for my first born and they were all very different being around the 1 mark. The papp-a and hcg were low indicating my placenta wasn’t working properly so I was advised to take aspirin every evening (which I took with my evening meal) to help the placenta work better.

I researched low papp-a in pregnancy and found some really promising stuff. However I then realised these were women who hadn’t been flagged as at risk for chromosomal issues i.e. their hcg was normal. I was in a different camp. I only found one woman’s results similar to mine who said everything turned out to be ok (on babycenter forum).

NIPT

We had this just before the last post at 4:15 on the Thursday and got a call from a screening nurse with the results on the following Wednesday afternoon. We had covid at this point which in some ways was a blessing as it meant I had no choice but to not go to work.

The screening nurse explained the results had come back as ‘high risk’ for Edwards’ which was devastating. There was no further information given from the test on the NHS (odds, fetal fraction, gender etc). We decided to then go for invasive testing. I wanted the amniocentesis as I had read in cases of confined placental mosaicism that this is the more accurate test. This did mean a slight wait as you need to be 15 weeks or more for this test. There had been cases such as one in Ireland I’d read about, where they had been given bad news on a CVS test only to find out the baby was ok when the longer CVS (long term culture) results came back and I didn’t want to go through that. I also read a lot of @SarahD19 ‘s posts if anyone wants to check out those.

The night we got the NIPT results (13.5 weeks) I was lying in bed feeling so devastated. I then started to feel the strongest fetal movements. I honestly thought I was going mad. I wasn’t expecting to feel this. I knew with Edwards’ babies movements were feeble. I thought this must be a good sign.

By 14 weeks my husband could also feel these movements from the outside. I couldn’t find any record of this online anywhere.

Around this time we started getting my first child used to having sleepovers at his grandparents in case we needed to be away from him to end the pregnancy.

When my covid stopped and I could technically return to work, I couldn’t. The GP was so understanding about giving me a sick note and my work were very supportive.

CVS

We went to a hospital a bit further away for our invasive test. I had been told I had an anterior (at the front) placenta at my 12 week scan. I hoped this wouldn’t be a problem for the amnio test however it was. They couldn’t safely get access to the amniotic sack and so gave me the choice of waiting an extra week for the amnio (to see if possibly, not definitely, enough growth had happened to give them a clear route in) or have the CVS that day.

We decided to have the CVS. I had local anaesthetic for this. The procedure itself didn’t hurt particularly because of this, however after I had quite a bit of period pain type pain for about 48 hours. I also had a bit of a dizzy turn after the procedure but I think I react quite strongly to anaesthetic. I wish I’d taken a sugary drink for straight after.

They also did a detailed scan ahead of the CVS and gave us a report which I poured over. Everything looked pretty much ok. He had long femurs, again he was measuring bang on for due date. They said there was a bit less amniotic fluid than normal (though nothing concerning and the opposite of Edwards’ babies). This could have explained the strong movements I’d been experiencing. The only negatives were that she thought she might have been able to see an issue with the heart, but couldn’t quite see. She thought maybe the head was an unusual shape, but from some angles it looked ok.

We had the CVS first thing Monday and got the results late on the Wednesday – about 6:40pm. Sadly these said full Edwards’. No mosaicism and no hope. I said I wanted to wait for the full karyotype (the test that turned out to be key in the Irish case). She was very very clear it would say nothing different but still we hoped. And I continued to research and research false positives from rapid CVS/short term culture. All the way along I felt if I could just find the right academic paper (using Google Scholar sped things up) then my baby would be ok. From this test we also found out the baby was a boy. Edwards’s is more unusual in boys than girls.

When I found out the gender I ordered some clothes for the baby to wear, estimating he’d be born around 18 weeks assuming things didn’t go our way. I found ordering these extremely hard but easier once I knew the gender as many seemed to be pink or blue. I didn’t realise the hospital would have lots of things I could have put him in, but equally, choosing something on the day would have been one extra thing to think about. My mum made the baby a blanket and we ordered him a tiny teddy. We wrote a little card with his name on and a message to him from his family.

About a week later we got the full karyotype. Full Edwards’ again. I asked if they would let me have an amniocentesis and they agreed they would try, for my peace of mind as I knew we would terminate once I was happy with the accuracy of the diagnosis.

Amniocentesis

By 18 weeks now we went to the specialist hospital again. This visit was different. Before we were hopeful, we’d only been through screening before and it was our first diagnostic test. Now we were there just to confirm what all the doctor’s already knew.

This scan was very different to the first. Again, we got the report but the baby’s growth had slowed. His femurs were now short (16th centile rather than 81st). And worst of all she could now see a clear issue with the heart and possibly the bowel. I knew they didn’t operate on Edwards’ babies but I still asked – if you were looking at a baby with this heart issue but no chromosomal issues, what would you be saying? She said this was a more major heart issue and though further investigation would be needed, it would require several operations to put right. They predicted his weight as a little over 200 g.

The amniocentesis was able to be performed. You don’t get local anaesthetic with this procedure as the needle is much finer and the anaesthetic hurts more than the procedure itself. I also had hardly any aftereffects (cramping etc) as I had done with the CVS.

Two and a half days later we got the inevitable news. Once again, full Edwards’ syndrome.

I remain so so grateful for to the hospital for letting us have the amnio. I don’t feel I could have taken the tablet and ended the pregnancy without the information the scan and amnio gave us, as I was still desperately holding out hope.

The next day I rang the screening nurse to ask for a termination.

The decision to say goodbye

I had researched what we would do when we got the definite diagnosis. I totally respect everyone will have different views on this, but these were my thoughts.

I had read about what life was like for those Edwards’ babies who did make it to term. To me, the days they did have sounded uncomfortable. I didn’t want to have a baby who struggled to swallow and do other basic bodily things I completely take for granted.

Once I saw our two reports side-by-side, three weeks apart, he’d slid downhill so much I am convinced he would have never made it to term.

I also thought a lot about my first born who, aged 3, fortunately never knew I was pregnant. If I continued with the pregnancy, eventually he would know and then he would be feeling such pain and grief I could have spared him from.

I also thought so much about the baby himself. I wanted to spare him the pain that was to come, before, I hope, he could feel any pain.

To me and my husband, the decision was clear cut and not one I regret. When my baby was born at 19 weeks, he weighed only 180 grams. This puts him at less than 2.5th centile and much lower than even my 18 week scan. I feel he only had a few more weeks left in him and I’m glad I spared him the hardship of struggling on even though I miss him being within me, every second of the day, I would always choose to bear that pain for him.

The termination process

We went to see the screening nurse the day after my confirmatory amnio. She was lovely. We had a really good discussion about what to expect and what would happen next. A doctor came in to do some paper work with us and talk to us about the fact I’d had a c-section before which did mean there would be a small chance of my scar rupturing.

The nurse then got the tablet ready for me to take. This is the one you take 48 hours before things really start. It gets your body to stop the pregnancy hormones and softens your cervix. My baby was moving while I took this tablet which was so hard. I was crying. The nurse asked if I wanted to take a minute before taking the tablet but I didn’t want to prolong things. I knew then I this was definitely the path that was right for all four members of our family. I knew there were side effects of this tablet such as nausea, vomiting and diarrhoea. As someone with ibs I felt sure the latter was coming my way but I had no side effects at all.

In two days time I was to ring labour ward to see when they wanted me to come in, e.g. if they’d had a particularly busy night they may want me a few hours later. Again when I rang they were so lovely and said they were ready for me but there was no rush.

We took with us the things you might take if you were going to have a normal delivery, such as maternity pads, breast pads, spare knickers, and comfortable things to deliver in. We were told the process may take hours to get going so we also took things to keep ourselves occupied.

Delivery after C-Section

When were arrived there was some debate as to whether I should be given a half dose of the next tablets to actually start the labour. As my c-section was just a horizontal scar and I was less than 20 weeks, it was decided I would have the full dose, but there would be the risk of scar rupture. This didn’t happen, fortunately.

The labour

Within 30 minutes of the first dose (pessary) I started with period pains. I could still feel my baby move. I tried to take comfort in this as I wanted his death to be as quick as possible. I didn’t want things dragging out for him over a long period of time.

These period pains continued to worsen. I was very keen that any pain relief would still leave me able to think clearly. I was so worried about being a bit loopy when I would see my baby for the first time. I had some paracetamol after the pains worsened. I later found a warm bath my midwife ran for me really helped. Later some gas and air took the edge off the contractions very slightly but I was expecting it to do more.

I started being sick a lot and the contractions grew worse and closer together. The midwife convinced me to have a low dose of diamorphine. This bought me a good four hours reprieve from the pain and I even managed to get some rest. The room was absolutely spinning but my mind wasn’t affected. It was like being in a drunk person’s body but with my own mind. Everyone’s experience may be different of course.

After the pain relief impacts of the diamorphine wore off, it was clear it was still in my system so I didn’t have any more. At about midnight, so about 12 hours since the period pain started, I had my worst and final contraction. My waters exploded everywhere. At first I thought it was blood or even the baby I was so surprised by the force of it. I was glad of my spare nighty.

The labour then stopped. I didn’t have any more contractions. I expressed my surprise about this to the midwife. She said it might just be my body needing some rest. I continued having my four hourly tablets. I managed to get some sleep but could feel a lot of pressure and couldn’t sit down properly, having to lie on my side.

The next morning after a shift change, a midwife said she’d like me to do some gentle pushes in the toilet (with a bedpan in place) to see if the baby came out. I was so shocked at the sound of this. She said she wondered if the baby had gone down past the womb (hence the stopping of the contractions) but hadn’t come out yet. She was right. After some very gentle pushes he came right out, along with the placenta. It didn’t hurt

But I cried and I cried as that wasn’t how I’d wanted him to be born. I asked the impact this would have had on him and she said he may be a bit more bruised because of it. I felt so guilty about this and so sad. My husband said at least it had given us chance to rest before we met him.

Meeting our baby

I chose not to look straight after I had delivered him. I didn’t want that image of him there. The midwife cleaned him for us, wrapped him in a blanket and passed him to be for a cuddle. Despite being so small, I was surprised how weighty he has in some ways. I wish I had cuddled him for longer. But I read this on every forum post. I think it’s just a way of feeling how hard it is to let them go.

We took photos. I read on lots of other posts about taking lots of photos as they end up being such a comfort. I didn’t really ‘get it’ until it happened. I look at them several times a day. My mum also said they offer comfort to her. We got to keep the blanket he was wrapped in. This all only happened a few days ago and it still smells of him.

The midwife took hand and foot prints, which are so gorgeous and so small. She then dressed him in the clothes we bought and wrapped him up. He looked so cosy, just as I had hoped. However I then felt I couldn’t get him out for further cuddles. I had planned on cuddling him more after that but I didn’t want to disturb him.

At the very start of this (12.5 weeks ish) I was looking into surgical options. I really didn’t want to see the baby. But by the end I wouldn’t have wanted it another way. My husband was much more hesitant but was so glad we did it this way in the end.

At the end the midwife gave us the choice of us leaving the room with the baby there or her taking the baby first. We chose the latter. After she took him I cried and she had to bring him back for me to say a final goodbye to. I told him how much we loved him, about his family and why we had to do what we did.

I had assumed we’d want to try again after he was born. We may still do this but right now I don’t feel another baby would help as it is him I want. I said to my husband, it felt as if we were playing a board game, but no matter what number we rolled, or path we took, we were always going to lose, and end up here.

Though it helps that it was ‘no ones’ fault and it was just ‘one of those things’ I still worry I caused this in some way and that it will happen again.

I keep talking to my husband who has been amazing, and hoping tomorrow I will feel a little bit better.

Your description of your feelings for your little boy are so moving- so much love for him. I am so sorry you and he have suffered this. I'm sure your account will help other women. ❤️💐

It sounds like you’re processing your loss well with your husband. It must be so hard to bear at times.

You write so beautifully I am so sorry for your loss. Your little one was so loved and cherished and that will never be forgotten.

I’m so sorry that this happened to you and your son xxx

Thank you for your kind words everyone xxxx Yes, he will always be part of our little family xxxxx

Love to you and family

I have been where you are, 10 years ago now. It was the hardest time. The guilt and not knowing what to do for the best for you, your other child, the baby. There seems to be no right answers.

In my case we were so lucky and had a successful pregnancy conceived just after the due date for our lost son. I am convinced she was just meant to be here, somehow.

Your post has moved me to tears. You write so beautifully about your baby. I think you are incredibly brave and do think your posts will also help others. Wishing you so much peace .

Lots of love to you 💐

You write beautiful and honestly about your little boy OP. I'm so sorry for your loss.

You've moved me to tears too @Missingmydarling

Your writing about your beautiful boy is quite breathtaking. He was so, so loved. He'll always be your son.

I hope you find peace. I don't know you but I'm sending love

I am heartbroken for you. Your words are very beautiful. Your baby was so loved xxx

What a very brave generous thing to do sharing your experiences. I am so very sorry you had to experience this and I am so sorry for your loss. I am sure that sharing your experiences will help others, I hope that it brings you some comfort.

Thank you for sharing the story of your little boy with us. Your words are beautiful. I am so sorry for your loss.

I’m moved to tears by your posts. Thank for you taking the time, energy and emotion to write it

I was in a similar position to you 7 years ago, and it will get easier

One of the things that I’ve taken great comfort in over the years was knowing that after every pregnancy, a small amount of Fetal DNA remains in your bloodstream forever
So sometimes, I rub the veins on the inside of my wrists and know that on some level, I’m stroking my son
it probably sounds insane but you’ll find a little way to stay connected to him and keep him a part of your family

wishing you all the best for the future

I’m very very sorry for your loss.