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.

Thank you so much for being so honest. I am so sorry for the loss of your little boy.

You write so beautifully and authentically. I am sure this will help others. It has helped me to understand more about what an old school friend went through. You are so brave, as are so many others but you have helped illuminate the reality.

I'm so sorry for the loss of your wee boy @Missingmydarling . Your love for him shines through and it's clear you wanted only the best for him.
As others have said, this will help others who go through this x

You sound like a truly wonderful person 💐

What a beautiful story filled with love for your gorgeous boy 💙 Wishing you and your husband strength and happiness in the future.

I wasn't expecting any comments. All of your words are so kind thank you so so so much I honestly can't express how lovely each message is. I'm so sorry to those of you who I made cry.

@sparechange that's not insane. That's so lovely. I totally understand and found that very moving x

@SweetMeadow That's so kind thank you x

So sorry that happened to you. Thank you for sharing your story

I'm so, so sorry. Thank you for sharing. You have been incredibly brave. This has made me cry so much. 18 years ago my cousin, also my best friend, had her second pregnancy diagnosed as Edwards and she chose not to continue. Well they advise you not to in fact - Edwards is deemed "incompatible with life". The day she was told was obviously dreadful. She phoned me quite late at night and there was lots of crying and I then said to my husband I really wish I wasn't pregnant - I was 6 weeks behind her with my second pregnancy. Some weeks later - I guess around 6 - we returned home from an Easter weekend away to an answerphone message from my consultant asking me to get in touch urgently. When I phoned him he said they'd been trying to get hold of us all weekend and that my blood results showed incredibly high risk of Trisomy 19 - I said Edwards Syndrome and he was staggered I knew. He very much recommended an amnio. I had anterior placenta. When they did they amnio it kind of showered blood down on baby - on the black and white screen it looked like snowflakes and my little baby put her hands up like she was trying to catch them. We had agreed we would say goodbye if the result came back as Edwards but watching baby try to catch the snowflakes I just thought I don't know if I can do that. We were incredibly lucky - no Edwards for baby who is now a lovely (sometimes) 17 year old daughter. I would write I feel your pain but I don't really do I - it didn't come to that for me but I imagined it and I hope you feel helped by writing this. You will definitely have helped other people. Much love to you and your family which obviously includes your darling little Edwards baby. xx

💔

Thank you for sharing your story, it has moved me to tears and I am sorry for your loss. I wish you and your family all the very best, you sound lovely xx

So beautifully written and has moved me to tears. So sorry you have experienced this.

Thank you for your post OP and sharing your story. I'm so sorry you went through that. I have asked MN over the years, MULTIPLE times, for a specific thread/header for TFMR. There is one for pregnancy choices, but absolutely nothing for those of use going through this for medical reasons.

My 1st pregnancy had Patau syndrome, found at 10 weeks on NIPT which I paid privately for. I'm sorry that you had to wait twice as long as me to get all the testing done and not have the TFMR until 20 weeks!!!! I was grateful to have everything done by 11 weeks and not start showing or feel any movements.

Take care and thank you again for posting your story.

Thank you for writing this, it was very powerful and you did what a wonderful mother would have done - protected your son.

I hope your healing journey continues on and you take comfort in your 3 year old x

Beautifully written. I'm so sorry for your loss 💐
I lost my boy to trisomy 13. He was stillborn. To get me through my darkest days I always kept in mind that I'm taking on all the pain that my son would never have to feel.

I was in your position 10 years ago. I was just past 20 weeks when our baby was born. There was a delay with tests over the Christmas period which pushed us further along. It was T21 for our baby, also a boy.

I know it's a cliché, but time does help. We had another baby a year after we lost him. It was stressful as I was so anxious throughout but the NHS staff we encountered were truly amazing .

Sending love to you and your family.

Such a well written post. I had a TFMR for Pataus 18 years ago,and so many things sun your post resonated with me.Bless you Op

Thankyou for writing down your experience and very sorry for your loss of your little one, it makes me so sad for everyone going through this. 💐

I went through the same thing recently in March and I keep feeling like I've forgotten little things that happened so reading your post brought it all back, our experiences of going through the screening processes and how long it all takes were very similar. I had to have the Nipt twice and got no results so we went straight to amnio.

My baby was only 166g when he was born and they couldn't say for sure if he was a boy or girl. I didn't get to hold him, didn't even think of it for some reason but he was given to us in a tiny little Moses basket and we took some photos. We brought him home afterwards and he's buried under a tree in our garden.

I hope that your post helps anyone going through this.
Mumsnet really should have a TFMR section on here I think it would be useful as alot of people are so unaware that things can go so wrong when they have the 12/20 week scans.

Thank you for everyone's very kind words.

@MissCaptain I'm so pleased you had a positive outcome. It still sounds very stressful. Thank you for your kinds words xxx

@MarmiteCoriander I'm sorry for your loss. I think experiencing this with your first pregnancy must make it extra hard. I agree the Pregnancy Choices didn't feel like the right board for me a lot of the time

@OatmilkandCookies Yes I feel the same. I was saying to my husband yesterday, if, for some reason, the baby felt less pain at 40 weeks than 19 I'd have absolutely kept carrying him. I know I did the right thing for him.

@Tidypidy I'm sorry for the loss of your little boy xxxxx

@wizzler Thank you for your kind words and so sorry your baby had Patau's xxxxxxx

@CameraCoffeeCrochet I'm so sorry this has happened to you too. Lovely you get to keep your baby close. Thinking of you xxxxx

@Missingmydarling, I have just read all your posts.

Sending lots of love to you and your beautiful boy XxX

@yourestandingonmyneck thank you. Five weeks on and I'm feeling a lot better. Looking back I see how much worse the pregnancy hormones make things. I'm back at work now and feeling like my old self, but as my bereavement midwife said "just with a little extra piece". Xxxx

Hello @Missingmydarling
Thank you so much for sharing your story or love and loss, my heart broke for you at the same time it was shattered for myself.
I found your story after my 99% likely for Edwards Harmony, at the time I was still refusing to believe it could be true and I cried for you more than for myself. I couldn’t write to you then because then it would be real.

But I’m so grateful that you gave me insight into the journey I was headed on, it helped me brace.

My Harmony result was 99% Edwards at 10w5d, I had been so excited to tell my girls they were going to have a brother or sister, instead I sent the ‘big sister’ t shirt back and had a combined test and scan that showed a perfect baby, a small nuchal fold…but terrible PappA and HCG and at 41 my score was 1:2 for Edwards.
Still couldn’t/wouldn’t accept it because he looked so perfect, no markers.
So I waited until 13 weeks for a transvaginal CVS, again the scan was perfect, every organ was functioning, nothing showed up..
But again the CVS confirmed the NIFT and I was told to terminate. My research told me that the NIFT takes the same Cell Free DNA as the CVS, from the placenta not the amniotic fluid so still I rejected the evidence.
Having read every single report on Edwards/T18 since the 1980s, I was clinging to the 1-2% chance it was confined placental mosaicism, I feel like I’ve done a PhD in Genetics on the last few weeks…

And so we waited another awful 2 weeks for an amniocentesis which finally confirmed with absolute certainty it was Edwards;
at 15w3d the scan showed major issues with his heart and kidneys, unquestionably incompatible with life.

I had booked, cancelled and then rebooked a surgical termination through BPAS but your story gave me the courage to have a medical induction, the birth him, hold him and say goodbye to him.

He was born yesterday at 4.21pm, he had a cleft lip and talipes but he was absolutely perfect to me and I am so glad I delivered him, met him, loved him and said goodbye to him, but my god, it’s been the hardest thing I’ve ever ever known. I’m don’t know what to do with myself and all this love but I do know that people like you who share their painful experiences make the world a better place for people like me. Thank you and sending you love and strength as the time goes by.

xx

@Justholdingmybreath I'm so sorry to hear about the loss of your baby boy. It made both me and my husband cry. The first week afterwards is undoubtedly the hardest. Our stories sound so similar. I remember the desperate research and hoping, especially when scans don't fit with what you're being told. I wish I could make your pain go away.

Thank you for taking the time to share your story. I'm so glad my tale helped you as there is so little good that come out of these things.

A few things which helped me in the early days

• the aim is just to survive the first few weeks


• knowing it was nothing I had done or hadn't done. I wonder if many women have a 'dodgy' egg in there somewhere but for most it is just a period (they weren't trying to conceive that month) or the pregnancy ended sooner itself.


• I stopped my pregnancy so my baby would never know the pain of his condition. I took that pain for him that was a brave thing to do.


• I felt a lot of guilt initially. Not about ending the pregnancy but if I laughed or had a 'good day' I'd then feel awful about it. I know a few people who have lost babies/children and I would say to myself, how would I judge that person if they had done what I did/ had a thought that I'd had. I then tried to apply the same kindness to myself


• Finally, and this is a personal one which some may not find helpful at all....I tried to find things to be grateful for. Small things. I was grateful I lived in the UK where the NHS would offer this procedure and support me through it. I felt grateful we had a child already. I felt grateful I had a supportive husband. I felt grateful I was in a safe country and one which was a lot less likely to judge for having a termination than in other nations.


• I feel it has made me more empathetic to others who have lost a baby


• Also, looking back I can now see how much worse the pregnancy hormones make everything which probably explains how sometimes mums and dads can appear to be at different stages of grief in the early days. A bit of a fog cleared for me after around four weeks and I wonder if that was the hormones settling down.

Sending so much love to you and your family xxxx

@Missingmydarling

Ah, thank you for your reply, everything you have said rings true.
We took the girls out to a garden centre today and it was nice to do something normal without the anxiety and worry of the last 5 weeks hanging over me and I felt quite content and normal for a while and then I felt a huge wave of guilt for laughing at the girls antics and for feeling alright for a while when my poor Alfie is cold and alone 10 miles down the road in the hospital mortuary. 😔
But I remembered what you said about being as kind to myself as I would to a friend and also about gratitude. It does sound like a crappy cliché but it is true that I have so much to be grateful for, I have two incredible, funny daughters, a supportive partner who I’m closer than ever to, I found out as early as possible about Alfie’s condition, I’ve saved him and his sisters from physical and emotional pain, I’ve had truly wonderful care from the NHS, I have had so much love and support from my friends, my neighbour took the girls for a few hours today and returned them to me with a home-cooked dinner and a pavlova and the sun was shining.
It is the worst experience of my life but I have many blessings to count and that’s helping.
I’m sat at home with cold cabbage leaves on my sore boobs and a massive gin.
Now instead of obsessively researching genetics and karyotyping, I’m researching supplements to improve egg quality, I’m sure it’s unhealthy to even be thinking about conceiving again but I need to proactively plan for the future now the future I had my heart set on has been dashed. I’m 41 and this is my second loss in 7 months so I’m feeling so anxious that I’ve missed my chance to have a healthy baby.
I work as a maternity nanny caring for newborns so this is especially tough, I’m back to work for a night on Wednesday with the sweetest 8 week old and having snuggles with him these last few weeks has been lovely but it really hurts too as a reminder of what I’ve lost. The mum had offered me the newborn clothes he’s outgrown and now I don’t need them.
Still, as you and the other ladies on this post have reminded me, we are much stronger than we realise and I know it will get easier.
I’m glad to hear you’re feeling a little better as time goes on and I think you’re right that once the hormones subside it will feel less overwhelming and reminding myself of all the little things I have to be grateful for will help me stay afloat.
So much love to you and your OH, I’m sorry I made you cry. Xx

@Justholdingmybreath I've been thinking of you. I hope the pain is easing a little for you x

Oh bless you, thank you. I’m a little bit more okay each day, today passed with no tears until about an hour ago (I had to go to work) and when I’m alone in the car, I always find myself crying.
Finally all the awful hormones have tapered off and I don’t feel quite so desperately sad but I put my maternity stuff away at the weekend and that was so hard to do.
I just can’t believe that I’m back to square one AGAIN and will once again be TTC -
more anxiously than ever.
I’m not sure I’ve got the courage but this loss has made me realise just how
much I want a bigger family and the clock is ticking louder than ever at my age.
I’ve heard that you’re more fertile after a
pregnancy so I suppose there’s no reason to delay trying except angst.

How are you holding up? I hope things are
continuing to feel a bit easier for you.
I think when the chaplain calls to talk about his funeral I might find that I’m not doing so well after all.
Have you said your goodbyes yet? Xx