Bad trisomy 13 CVs

[Leshec]

Could not find many recent threads on this. Found a lot of comfort in hearing bad stories and the humanity with which women supported eachother. Im a man writing about my experience and our experience as i see it. We are in bits. Hope it goes better for others. Sorry this a stream of consciousness so dont mean to offend or alarm. We had a bad result. Im sure many people will not have. But some will and that can be ok too. I was an expectant father posting to help process. If others are in a similar situation may or not help.
We had an 11 week scan. Good ultra. It was hard to measure the nuchal as foetus was just less than 4.5cm. Sonographer said we needed another test but said the good scan was a good sign things would be ok. Nonetheless nuchal around 1mm unofficially. We felt good. Then she managed to find a 4.5mm for crown to rump and nuchal circa 1mm. So we were relieved and happy not to have to come back for another scan. In the waiting room we were super happy. I realised all the other couples weren't all happy and relaxed and felt bad being excited as others might not have a smooth pregnancy and problems. Then we got the combined blood tests 10 mins later. The PAPP and HCG were on the floor. That opened the doors of hell. From there we faced either a trisomy or difficult pregnancy with pre-eclampsia. We had an NIPT. All the literature is completely confusing and odds very difficult to understand. That came back positive for T13 at 60% odds. We had a scan privately again with healthy anatomy. Perfect. The doctor (in italy) said there probably was some T13 but this could be confined placental mosaicism (cpm). This gave us hope but also fear because CPM has risk in extreme to mother and baby. However small a risk the prospect of a terrifying pregnancy with late loss of baby or even or both mother was not good. Nhs did a CVS. That has just come back positive for T13. The combined risk of Patau and risk to mother (also a heart condition) means we will opt for termination. All pretty bad.
I dont know why i am posting. Shock/processing?
We have tried to prepare for worst and hope for the best. But here we are. What next?
Termination is what we have chosen as a result of life limiting condition and risk to mother. I would understand why someone would go to term. But we weigh risks too much. We dont want a medical termination but surgical due to trauma. This is now something we have to contact another organisation for. Another barrier to normality.
All i can say is NIPT was very stressful due to confusion over how they calculate/reliability.
We have met many healthcare people who are all amazing. But have never felt we had one person from start to finish. All results should in my experience be given face to face whether good or bad. Its so shocking and confusing otherwise. My partner has been in bits throughout. We declared mental health problems for her (not for me though that is an issue too). And it's not all been joined up. We will try again as T13 can just be a 1 in 12000 accident. But also predisposed if one of us has a certain genetic profile. Who knows? Hopefully we can try again but probably not more than once due to the stress.
Some politics has helped. The baby never had language or experience of life so is not yet a person. It cant process thoughts or be in the way we are so its a potential. My partner said that all the things we hoped for its life actually are hopes we started before conception. So its the idea we mourn rather than this foetus. The next can fulfil a potential this one cant and the next can be a person not just an idea or potential.
To anyone who has a T13 child I wish you the best and salute your courage. The risks are too great for us. To anyone worrying how do you cope? Im not sure we have yet. But it has made us stronger and through this I love my partner so much more and there are depths we found in eachother that i didnt think were there. The hardest part was I will not be a father in July afterall. Especially after my father was estranged and that always put me off. Now i wanted to be a father its an unknown. And we have to pick up the pieces and my partner go through more horrible experiences before this is over or we can start again if possible. So i guess my post is to those who are searching desperately for hope is to say. Things can get worse and be really shitty. You need hope but that can be a burden. But in the end i think we will be ok. Whether that means will a child or without. There is reason to go on and life can be good again in ways we cant expect. Just 4 months ago we were not pregnant and not even trying. Who knows where life will take you so be strong. Q

[User3billion]

I'm sorry to hear you've been through such a terrible time. You're very right in saying that the NIPT screen often adds to the confusion & heartache.

I can't offer any personal experience but I wanted you to know someone had read your post and was thinking of you. I wish you and your wife the best for future pregnancies. I hope you allow yourselves the right & time to mourn too.

[Leshec]

Thanks User3billion means a lot to have a post acknowledged. Helped to write something. I guess other people are going through this and i could not find recent posts sort of added to the ambiguity and distress. If i dont repost its just healing not ignorance. Some times other people experience can help even if not a good outcome. Best wishes to everyone going through any pregnancy. Its fraught. But especially those who have a bad one or even cant have children. There is always a way to wholeness. I couldnt get home fast enough for fear my partner would hurt herself. But there is always light and as I said i relationship means more now i hope even if there are bumps we will both come out more prepared for what life throws at you. Best of luck to those struggling. Its unbelievable difficult and strange to go throw so feeling lost is ok.

[UnaOfStormhold]

So sorry to hear this. If you've not yet come across it, you may find the Antenatal Results and Choices website and their private forum a helpful source of advice, support and solidarity for those who have been through similar experiences.

[Leshec]

Thankyou UnaOfStormhold i did call. Spoke to Sally. It helped. That was before CVS. Im not great on calling people who offer support but actually it helped a lot just to talk. So id really recommend your advice to others even those reticent to seek help.

[Bouledeneige]

I'm sorry to hear your experience. I have no experience of tests results leading to a termination so cannot say anything useful there or about the factors you have had to weigh up so painfully. My deepest sympathy. But I did lose my first baby who was Patau's at 17 weeks. The baby died in the womb and I had to give birth to it.

A couple of thoughts. Firstly, the pain was visceral, gut wrenching grief. It just had to come out. I think I was off work for a few weeks - I couldn't function. It was my first pregnancy and the loss of so much hope and expectation.

I realise our situations are different but something one of the midwives said to me gave me a lot of comfort 'we all have a limited time on this earth - some many years, some a very short time like your baby'. She hugged me as she said and it was very comforting. I came back to it many times. I also a little while later wrote about my experience - I never shared it with anyone but it helped me to express how I felt and what happened.

After I list the baby we learned that a baby with pataus has no sustainabile life so in my case nature took the right course.

We had all the tests but there was no genetic reason why it happened - it was just a bad roll of the dice and a misfire of the chromosomes. We were advised to get pregnant as quickly as possible which I did. My next pregnancy was consequently very nervy at scans and with tests but I ended up with a very healthy baby girl. She is now a beautiful breezy19 year old who simply would not exist if my first pregnancy had gone to term. She is a blessing. Later she had a brother too.

I'm not sure if any of this is of use or relevance to you. Nature is cruel and deals gut wrenching blows. It won't stay the same forever but I sympathise with both your pain.

[Leshec]

Thank you Bouledeneige your comments are very comforting. Sorry you had to go through that too. Bw

[Leshec]

Only other thing I want to add is NHS at guys st thomas london have been amazing every single person we met and especially the midwife who took us through this since problems came up. They are incredible people.