Pregnant after Turners Syndrome Loss

[BeautifulBirds]

Evening All,

Just found out I am pregnant, which is amazing.
I sadly lost my last baby in August last year due to Turners Syndrome. She was 14 weeks, delivered at 15 weeks.

I am trying to remain calm, and slightly disconnected.
The anxiety is ramping up. I keep waking up thinking I've forgotten to do something, given someone incorrect information or just generally in a panic state.
What can I do to overcome this? Any ideas?

Thanks

Hi OP, gentle congratulations 💖
I had a TFMR in 2021 at 33 weeks as my son had brain damage caused by strokes and seizures in the womb. I then found out I was pregnant six months later. Like you, I was absolutely terrified. I imagined that the worst was just going to happen again.
When my son died, we opted for genetic testing and we received the results when I was 8 weeks pregnant with our rainbow baby that showed I actually carry a genetic condition that had passed to my son and caused the strokes etc. Because of this, we opted for a CVS at 12 weeks to see whether our rainbow baby had the same condition as our son. We found out within a matter of days that she did not carry the gene. However, this didn't stop the worry for the rest of the pregnancy! I can't even count the number of private scans I went to in order to make sure she was okay (we found out our son was poorly at a private scan so I think that's why).
However, we were consultant led at our hospital and they arranged extra scans for us just for reassurance.
It's a scary road, but try and just take each day as it comes. Don't be afraid to ask for help. I was seen by the perinatal mental health team as my anxiety was just out of control, and they provided counselling for me.
I wish you all the luck in the world 💖

Thanks for sharing @Littlelighthouse. How heartbreaking for you.
I've just had my booking appointment through , so hopefully that will calm me.

I had a TFMR for Edwards at 18 weeks. I am now 9 weeks and waiting to do NIPT. I don't have a lot of comfort other than to say that you don't walk this path alone.

There are two things that I think about in pregnancy:

1. Worry doesn't protect us from tomorrow's sorrows, but it robs us of today's joy.

1. Today, I am pregnant.

Right now I don't project to what it will be like to have a baby, I just try to think about being pregnant today, and embrace that small joy.

I really hope you find peace. It is completely out of our hands.

@EMcG3 that made my eyes leak!!!

And it's so true. I will try to enjoy being a mumma for the 3rd time.

I wish the hospital would see me sooner to discuss options. The consultant we saw last time said they wouldn't routinely test for Turner's, so unless there is an issue in the scan they wouldn't test for it.

@BeautifulBirds
hi, sorry to join this thread late but I am going through something similar and would love to know how your getting on?

I had a MC at 5+3 in January and then I lost my baby girl to turners syndrome and delivered her at what was supposed to be 15 weeks. I only just found out about her condition yesterday.

I just want to know how your pregnancy is going and also how you are feeling? I want to be pregnant again but am terrified of this happening again and am so so worried I will be too afraid to bond with the baby.

I just would love to hear your experience so far if it’s not too personal 💐

Hi @MummaDaisy
I am currently 12.5 weeks, with first scan due at 13.2
The pregnancy hasn't been easy so far. No physical complications but emotionally both myself and husband are exhausted.
I am still not connecting with the pregnancy and my husbands mental health has taken a big dip.
We are trying to stay close and supportive but it's a challenge when I don't want to be intimate.
We have other family things going on, too.
I have an appointment with the mental health midwife at 18 weeks.
I'm hoping the scan next week will help us.

It's been bumpy so far, but being a person who likes control, this situation (and the others we are facing) is very difficult for me.

I'm so sorry this is such a worrying time for you OP.

I know everyone's situation is different but I hope this might be reassuring.
I had conversations when pregnant about TS as my sister has it and the sonographer said that it is usually very clear on the scans which babies are badly affected and unlikely to survive the pregnancy. Although that doesn't help you now, hopefully after your scan it will help you relax a bit.

Also, TS is not an inherited condition in the same way other genetic disorders are. It's a spontaneous mutation, so there's the likelihood of it occuring again is no greater for you than anyone else. I can understand this doesn't necessarily reduce the anxiety but I thought I would mention it just in case.

Finally my sister is amazing. She didn't find out she had TS until she was 10. You would never know she has it. She now has a PhD in genetics - it has never held her back. I'm not trying be insensitively positive and it would probably still mean a lot of anxiety for you if you had a little girl with TS given your experience but the literature is so negative, I just wanted to show that it's not always disastrous, although any potentially serious medical condition is worrying for parents.

I hope that's come across the way I meant. I'm not trying to minimise or dismiss your concerns but wanted to give some positive experience. I hope all continues to progress well and you get some stability with the other problems too.

Thanks @DieDeutschLehrerin

I know it's an extremely rare condition, and highly unlikely to happen again.

I am nearing 40, so at an increased risk of chromosome issues.

I had to essentially give birth to my baby, retained products, lost a lot of blood, was in more pain than actual childbirth and needed emergency surgery.

All these things combined caused trauma to myself and my husband, which we never want to go through again. This is probably more what we fear than complications.

@BeautifulBirds I'm so sorry for your experience. That sounds very traumatising. I wish you all the strength and support you need during your pregnancy and after.

Hello @BeautifulBirds , I just found this thread and wanted to wish you well and say that I hope things have progressed well with your pregnancy. Reading your story is almost identical to mine, had to have a TFMR at 14 weeks last August due to TS, having to deliver then leading to emergency removal of placenta etc which was hugely traumatic. I'm now almost 38 weeks pregnant, has been at times a very difficult process, in lots of ways we hadnt expected (not just anxiety over initial scans but things like recent NCT course - husband really struggled with section about emergency cesarean because all the pictures etc were so similar to when I was rushed to surgery). Now entering the final stages and facing delivering on the same ward as baby was lost in a couple of weeks, due date two days after the anniversary....have had plenty of counselling and family and friends have been supportive but it's such a specific series of experiences, it's hard for other people to understand...anyway, I hope you are doing OK.

Thanks @Thefrogwife

I have been offered no counselling and had very little support, other than family.
My recent pregnancy came to an end about 6 weeks ago at 18 weeks despite all scans and bloods being fine.
The support this time is worse than before. I'm angry at the hospital as at my booking in the midwife said she would get me scanned at 11 weeks. I got scanned at 13.2 where they measured me 14.6. The sonographer then said I'll have to put it as 14 otherwise they won't do the bloods. I'm considering a complaint but don't know what it will achieve.
Best of luck with the rest of your pregnancy and labour. X

I’m so sorry to read this. It sounds as though you’re having such a hard road to parenthood. I’m so sorry it’s happened and that you haven’t had the support you should have had. I hope you and your husband can stay close and support each other and that things turn out well in the future, however you decide to move forward from all of this.

Oh @BeautifulBirds - I am so, so sorry for your loss. 18 weeks is such a long time to live in hope and tentative expectation, for it to all come to naught. I really hope that you find peace and path forward. ❤️

I'm so sorry. 💐
There is a mc thread you might want to look at here and there are links in the Op for support groups. I also had a loss due to Turner Syndrome, btw. My heart goes out to you.

https://www.mumsnet.com/talk/miscarriage/4732386-support-thread-for-those-experiencing-or-recently-experienced-a-mcmmc-thread-7-all-welcome?reply=128164597