Trying again after losing a baby with Edward’s Syndrome

[123ChloLo123]

Just wondering if anyone else finds themselves in a similar situation. We have had three miscarriages before we had our beautiful girl and boy then tried for another baby and at twenty weeks we were told he had Edward’s Syndrome and that it is not compatible with life. I carried him to 40 weeks and 6 days and he lived for a few minutes. He was born the 25th June 2019 and we have decided we want to try again. Just having mixed feelings and mixed emotions and would love to talk to someone in a similar situation so as I don’t feel like I’m going mad 🙈

I haven’t been in the same situation OP but wanted to say how sorry I am for what you have been through and continue to go through.

I lost my baby when I was 17 weeks pregnant and I am petrified of trying again. I have a gaping hole in my life, but I am so scared of something bad happening again.

So sorry for your loss! It is so so hard. After our miscarriages I was a nervous wreck when I got pregnant with Chloe but thankfully everything was ok and the the same with Logan. Then when we got pregnant with Ethan we thought it would be plain sailing but nothing could have prepared us for what happened.

How long ago did you lose your baby?

You're not going mad OP! I can completely understand why you would have mixed emotions at the prospect of trying again after losing a baby to Edwards Syndrome. In 2016 I also got a diagnosis at the 20 week scan but it was for Patau's Syndrome. My baby boy was born at 36 weeks and lived for 10 hours. We already had a daughter who was 2 at the time and we've now been trying for another baby for the last 3 years. When we first started trying after losing our son, I had so many mixed emotions. I had so much love for the baby we had just had to say goodbye to and was worried that I wouldn't perhaps feel the same for another baby but at the same time, there was a huge void in our lives and we desperately wanted more children. We then went on to have 3 consecutive miscarriages and I am starting to lose hope that it's ever going to happen again for us. After the miscarriages, a lot of my original fears of being pregnant again have been replaced with a fear of not ever getting past the 12 week scan. I guess we just have to accept that going through what we have, any subsequent pregnancy is going to be hard. Each time I've fallen pregnant, I am filled with so much hope that this time it's going to be straight forward but I also can't let myself be too happy or too hopeful because it's such a disappointment each time.
I hope that your experience of trying again will be much better than mine. You've been through a huge thing but don't ever forget what strength that took and the fact that you want to try for another baby means that you're still so strong and you will handle whatever is thrown at you. Sending so much love and courage your way xxx

@Dots11 so sorry you went through this! It is absolutely horrific. In one way I found it was good we found out at 20 weeks as I know of parents that don’t know until their baby is born. Although it was difficult having the 20 weeks helped, to get everything organised and decide on exactly what we wanted. So all important decisions where made before hand rather than when we were in shock and everyone around us new what it was that we wanted when it all happened.

Have you been referred for tests for the miscarriages? When I had my three before I had Chloe we were sent for testing but then I got pregnant with Chloe but then we didn’t need the test done because thankfully she was ok. It’s so cruel to have gone through all that you are so strong I don’t know if I could have coped!

I know exactly what you mean @Debbie1989. Finding out early, as devastating as it was, gave us time to process and plan for the inevitable. We had so much support from family, friends, our psychologist and the local hospice. It meant that we'd already formed the support network that we would need after giving birth and saying goodbye. Did you have the support that you needed as well?

We're under the recurrent miscarriage team at our hospital but I was just about to get my blood test results when the lockdown happened and our appointment was cancelled, so we won't be finding anything out any time soon. Tbh I wasn't very hopeful anyway as I know that it's often the case that miscarriages are unexplained.

We're just trying to take each day as it comes right now and not think too much about the future. Stress levels are high enough as it is right now!

Have you made any decisions about when you may start trying again? It's so tough isn't it.

@Dots11 yes we had brilliant support we had a bereavement midwife and she was honestly brilliant she had lost a baby so when she was talking you could tell she knew what she was talking about. Our local hospice also linked up with us and continued monthly visits and done loads with the kids so it was really good.

I know what you mean I wasn’t really hopeful when we were waiting for the blood tests and we went on to have the three kids so I don’t know what the problem was.

We actually found out yesterday that I am pregnant, and honestly I don’t know what I was expecting but I just started crying I don’t know if it was happiness or sadness, I just felt like I was betraying Ethan somehow, and I didn’t think it would happen so quickly but so glad that it did, I’m a firm believer in fate and I see this as a wee blessing from Ethan. But can’t get too excited, with our history we always had to wait until 12 weeks to get excited we could never make it past 6 weeks with our miscarriages, and now we have the added anxiety of having to wait until 20 weeks to be sure everything is ok. So for now need to just see what happens and try not to get too stressed out about it.

Oh @Debbie1989, I'm so thrilled for you. It's not straightforward though is it. I also remember that feeling of happiness and sadness all at the same time when I got pregnant the first time after losing my son. It's a weird feeling of replacing them somehow isn't it, even though another baby would never be a replacement. I guess it comes from only being able to hold them for such a short time and having a huge void in your life where they should be. With each subsequent pregnancy I had, I just tried to accept that I was always going to have a huge range of emotions and they weren't always going to be positive.
Try to be really kind to yourself. You are by no means betraying Ethan and he will always be a part of your family. Being pregnant now is simply another chapter for you, it doesn't rewrite anything that has already happened. I'm sorry that you aren't going to be able to have an early reassurance scan. The 12 week scan must feel like such a long time away right now. Just take it all one day at a time and if you can, let yourself be happy. I don't know if it's something you're into but meditation and mindfulness help me so much. I naturally tend to overthink things and worry about what may or may not happen in the future, so meditating and being present in the moment and focusing on breathing slowly is something that I try to do every day. It's been a game changer for me when things have been hard.
I'm here if you want to chat. It makes a difference being able to talk to someone who can relate to what you're going through. Sending big hugs your way xx

@Dots11 Thank you! There is a place close to us that do private scans I know a lot of women have been doing that as partners are not allowed to join them at the hospital. I might book in for a scan round 10 weeks, we have done this with all other pregnancies just for a bit of reassurance. I will contact my hospital to see if my husband is able to accompany me, when I got my news at the 20 week scan I was on my own he works an hour and a half away and we honestly felt everything was okay so I told him to just go on to work. So I never want to have to receive any news like that on my own again.

If the hospital can’t let him in I can go to the private place and they can send all the information over to the hospital. I know the restrictions have to be in place but I myself think it is crazy for women to be going in on their own. Unfortunately we know too well that not every pregnancy ends positively, I think 1 in 5 at the minute ends in miscarriage so with such a high chance I think it’s horrible that large numbers of women will in fact be receiving this information without any one to comfort them.

We had a difficult time with our hospital they didn’t follow our birth plan and they didn’t do anything for Ethan when he has born they didn’t have the resuscitare in the room as was agreed, afterwards the midwife wouldn’t let us bathe him she said he “wasn’t that dirty” meanwhile he had meconium all up his back I had to peel it off. They sent us home with a cold cot that didn’t work and all remaining ones in the hospital also didn’t work so my sister in law drove 40 mins to a young girl who had raised money to buy some and ironically the hospital said they didn’t need them. Then the day after the funeral the hospital rang looking us to take the cold cot that didn’t even belong to them into the hospital as if that wasn’t going to be traumatic. Thankfully my husbands cousin is a nurse there and she came and took it in. Then it took a month and a half to get his death certificate they couldn’t find it 🙄

So safe to say I have little trust in them which is such a pity because it was only the one midwife that had caused most of the problems everyone else was fantastic, we did put in a complaint and hopefully things have changed so that no one else has to go through what we went through.

It has though given me the confidence to speak up for myself, and so I want this pregnancy hopefully if all goes well to go on my terms and the same with the birth I will have my birth plan for all outcomes and will make sure that my midwife knows exactly what it is that we want.

It really is so nice to talk to someone who has been through something similar, at times I genuinely feel like a crazy person, my husband was so confused when I was crying because I didn’t know why I was crying it was all just so mixed! He is getting really excited but I’m just not there yet I won’t let myself, I know either way it won’t make a difference because what is going to happen will happen but I suppose I’m trying to not let myself get hurt. Even though it won’t hurt any less if anything does happen.

I'm sorry that you had such a rubbish experience with that one midwife @Debbie1989. In such a difficult situation, it's so very important to be listened to and have your plans followed as much as possible. It's heartbreaking when that doesn't happen isn't it. You're absolutely right though, it makes you not afraid to speak up for yourself moving forward. Well done for being so positive. It's not easy.

How are you feeling now you've had a few more days for the news to sink in? I've been thinking of you x

The news has sunk in now and I’m not anxious I really thought I would be! I suppose with everything we went through I developed the mentality that there is nothing I can do to change what is going to happen so being anxious and worrying is just going to put extra stress on to me!

Sickness has kicked in the last few days and honestly I’m just thankful for it because it gives me hope that this pregnancy is going to be ok. With my precious miscarriages all growth seemed to stop at 6 weeks. I will be 5 weeks on Monday so just want the symptoms to keep coming.

Rang my doctor on Tuesday and he is referring me to the Early Pregnancy Clinic, I was referred there with my daughter, but after her I wasn’t referred because I had a successful pregnancy. But my doctor said he wants to refer me just with my history and just to be sure everything is ok. So just waiting to see if an appointment comes through. Then I will probably book a private scan for round 10/11 weeks so my husband can come with me. We have decided we aren’t going to tell our kids or families until 16 weeks. See if the hospital can give us a scan there to see if they can see anything unusual or we will just wait and get a private scan if the hospital won’t do one.

The kids have been through enough so I don’t want to give them false hope again and even if everything is ok in the scan I will have to try and explain to her that hopefully we will get to take this baby home but we will have to wait and see.

How are you through the lockdown? I know you can’t get your tests done, are you going to keep trying? After my second miscarriage there was a nurse that was looking after me and she has said about taking baby aspirin when I was going to try again for another baby. Sometimes our blood is too thick that it sometimes has trouble getting to the baby. Although I did take it with my third pregnancy I still had a miscarriage although there was a lot of stress round my third pregnancy my auntie took I’ll suddenly with cancer and was in a coma for two weeks before she died. I knew when I found out that I probably wouldn’t be able to carry it. I had asked my doctor about the baby aspirin and they said it wouldn’t do any harm. I took it with the rest of pregnancies don’t know if it did actually make any difference. Although I’m not taking it this pregnancy as I couldn’t manage to get it the last time I was out shopping before the lockdown.

@Debbie1989 how's the pregnancy going? Apologies I didn't reply to your last msg. Things got a bit tough during lockdown and I came off MN. Back now though!

Hey! All is going good! Only 8 weeks left on Monday. Anxiety is starting to kick in big time so just trying to manage it at the minute. We had tests done and numerous scans and everything is perfect, we found out the gender and had a gender reveal for the kids so it’s another little boy 💙 need to be prepared because I’m due the 21st December so with the madness of Christmas wanted to be sure that we had everything we needed. How are you? Any more news on getting your tests done?

Oh I'm so pleased to hear that everything is progressing well. How lovely to be having another little boy, your other sons must be so excited! Only 8 weeks left....that's gone quickly! Has it gone quickly for you? Can understand the anxiety coming back towards the end of the pregnancy. Have you been supported well by midwives/consultants so far? Hopefully they'll be supportive with whatever type of birth you want.

So I didn't get anywhere with the recurrent miscarriage team and my last pregnancy which was supposed to be sent off to be tested was lost by the hospital and so that didn't happen which was upsetting. Anyway, fast forward a few months and I'm pregnant again. 10 weeks atm and so it's still early days. I've got my scan in a couple of weeks and so will find out how things are going. Trying to stay positive but after my son having T13 and then 3 miscarriages, I'm also very much preparing myself for it to be bad news too. I guess it's natural to try and protect yourself isn't it.

Aw congratulations! I’m so happy for you, fingers crossed and I’ll say a prayer that all goes well.

It has gone quick but at the same time seems like such a long time ago that we found out. My bereavement midwife is brilliant she care with me for my last appointment and is coming with me for the rest of my appointments, she has been a great support.

Have you had any scan for this pregnancy? Wouldn’t you love to be able to fast forward time so that you would know if everything was ok. I got a blood test done when I was over 12 weeks pregnant to check for downs, patau and Edward’s syndrome, it was a relief to have those results and the early scan as well. I really hope everything goes okay for you 🤞

Thanks so much. Yes it would be lovely to fast forward at least to the 12 week scan!
No we haven't had any scans yet. I haven't had any cramping or bleeding thank goodness and so haven't had to contact the EPU. We talked about going for a private early scan but I'm not sure it would give me much peace of mind with it only being reassuring for that day. I'd still have the same worries waiting for the 12 week scan!
We also decided against doing any early blood tests as we know we'd make the same decision as last time, to continue with the pregnancy. Totally understand why people choose to have the tests but as we know we wouldn't be going for the amnio/CVS, there seems little point!
I'm just figuring that whatever will be will be, as tough as the wait is! At least it's only 2 weeks to go now to the scan.

I'm so glad that you've had brilliant support from your bereavement midwife throughout your pregnancy. It must have made so much difference xxx

Aw hopefully all goes well!! Really good sign though that there hasn’t been any cramping. Fingers crossed for you!

Yes I didn’t know whether to go for the blood test or not because we were the same we had decided that no matter what we would also be continuing with the pregnancy. But we ended up getting it done but had said that if it came back showing anything that we wouldn’t be getting the amniocentesis. Looking back now if I had more time to think about it I don’t think I would have got the amniocentesis with Ethan, I never would have forgiven myself if we had have lost him after that.

Hopefully the next two weeks fly by!