My Story

[twinklingstar29]

I have never written on a forum in my life, but I have found some comfort over the last few weeks reading other people's stories on here so I thought it was time to share mine.

I was happily pregnant with my first baby until 3 weeks ago.

My pregnancy was very stressful since the first scan and DS screening tests. We thought nothing of it until 3 weeks later when i received a phone call to say the risk of DS was 1 in 5. I was devastated. 2 days later I went in for a CVS, and 3 days after that I was given the all clear. The emotional roller coaster was horrendous but we felt that we could get on with enjoying the pregnancy now we'd had the all clear.

That turned out not to be the case. 2 weeks later I received a phone call to say the baby had trisomy 22 and they needed to do further tests in order to establish whether it was confined to the placenta. I went in for the amnio and a week later they confirmed that the baby was mosaic trisomy 22 as well. A week later we saw a genetics counselor and we decided to terminate the pregnancy as the prognosis was not good for the baby - it was unlikely it would make full term. The next day I was given a tablet to induce labour and 48 hours later I was in the labour ward with contractions and waiting to give birth. It all seemed to be happening so quickly and I didn't know what was going to happen - it's my first child and I had no idea how the labour would go. My little girl was born at exactly 20 weeks on the 29th September.

I don't have any regrets about the decision we made, but I feel so down. I don't know what I am supposed to feel or how to deal with the feelings of immense loss, it's not something I've ever experienced before. My OH is doing great and was back at work after a week - he found the distraction helped him. My work requested I return yesterday and I did, but I feel like I'm only there in body and not in mind. I feel very lost, empty and emotional, always on the brink of tears and unsure about where to turn. I feel as though I have become a mother but don't have the baby to show for it.

I have never reached out for help before, I have always been the strong one and everyone keeps reminding me I am strong and will get through this, right now I'm struggling to believe that and feel that I need to just put a brave face on it all.

[Rhubarb78]

I am so sorry to read your post. I lost my 1st baby just over 3 years ago at 24 weeks and the pain is unimaginable. You will be in a daze for a long time, i know i was. You seem to have gone back to work very early, i was off for months. Could your gp sign you off?

You are a mother, only your baby isnt with you anymore and that is the hardest thing to deal with. I have never felt pain like the pain i felt when i lost my lo and even now that pain can come over me and feel as intense as it did at the time. It will get easier though, as time passes you will get stronger and more able to deal with things but you do need to give yourself time. I wish i could write more but i need to pick dh up x

[morethanacondiment]

Oh Twinkling, I'm so sorry. I've got no experience or wise words to offer, but wanted you to know someone is listening.
There is a bereavement section here, and other mums who've lost their children support each other. I wonder if they might be able to help you?
Thinking of you and your precious daughter x

[twinklingstar29]

thank you both for replying, it helps to know there is someone that is listening.

rhubarb, I'm sorry to hear of your loss. Because I was only 20 weeks, my work want me back. I tried to explain to them that I wouldn't be any use to them, but at the same time I don't want to risk pissing them off and losing my job altogether, things are a little fragile at my company. I'm hoping that with each day at work, I'll begin to feel a little more normal and having the routine will help. Secretly I just want to curl up in a ball on the sofa!

x

[goosey123]

twinkling, I'm so sorry to read your thread. It must be such a hard time. I also lost a little boy last year, i think he had mosaic trisomy 22 as well. I had a similar roller coaster with a high downs risk, then initial clear CVS, then that awful phone call 2 weeks later. I didn't get as far as you though and miscarried at 16 weeks on the day I was due to have amino. So I never found out for certain that he had the trisomy. But they felt certain he did.

I remember how unbelievable it felt after all the false positives - making it to 12 weeks without bleeding, seeing a heartbeat and normal looking scan, and then getting the initial clear results. and then that awful conversation. I felt strangely relieved I miscarried as I remember how hard it was psyching up for the termination.

I found it an immensely lonely time. and just awful not being pregnant anymore. but time helped, I'm much more peaceful now. these kinds of threads helped. sending you lots of love and thoughts x

[twinklingstar29]

hi goosey, I'm sorry to hear you went through a similar thing, the false positives were so difficult. the termination was difficult, but also a bit of a relief, after the diagnosis I felt as though we would just spend the rest of the pregnancy waiting for it to go wrong, i couldn't live like that.

it is a very lonely time, you feel as though nobody has any idea how you feel and everything reminds you of being pregnant, or that you should still be pregnan t- including your hormones!! but you're right, knowing other people have gone through what you've been through and come out the other side definitely helps xx

[Rhubarb78]

Sorry that your work are not supportive, that was a lifesaver for me. You will probably have days where getting out and about will do you good, and also have days where you just want to curl up and cry. Its all normal but so, so painful.

Just be easy on yourself and do whatever you need to do to get you through. Dont feel like you need to put a brave face on for anyone or push yourself to do things that you are not comfortable with. Things will get easier in time.

[Forester]

You're currently going through a dreadful experience so I don't think you should feel that you need to be brave or strong. What you have experienced and what you're experiencing would be tough for anyone to deal with but the fact that it was your first pregnancy makes it even worse as not only are you grieving for your baby but also at the moment for your future lives as parents.

[nearlyreadytopop]

op im so sorry for everything you are going through. There is a section under body and soul called Antenatal tests/choices and there are sadly a lot of others there who have been through similar.
Have you thought about some form of counselling to help you come to terms with it all? I found cbt to be really helpful for me after a late loss.

[nearlyreadytopop]

for work, can your gp sign you off sick? Pregnancy and all associated with it is a protected category so the absence can't be held against you.
There will come a time when going back to work will feel like the right move, until then you need to heal.

[twinklingstar29]

I'm thinking of trying to see if the GP will sign me off. In the meantime me and OH are trying to book a (cheap) weekend away somewhere nice :-)

Thank you for all the support. Means a lot

X