NIPT has come back positive for Patau.

[Ceallaigh]

We had our NIPT results back as a 99% chance of Patau. The consultant was confident that the prognosis was correct but we had amnio taken yesterday just to confirm. We’ll then discuss what happens next but I don’t feel that we have much choice: the doctor said that the condition is incompatible with life as most babies die before or shortly after birth. Feeling devastated and also really alone as this is such a rare condition, only around 200 babies a year are diagnosed with this so struggling to find much to help online. Just feeling so lost at the moment.

I’m sorry
www.arc-uk.org
ARC are an amazing charity - would recommend you give them a call.

Thanks, I do actually have a leaflet for them that the hospital gave me. Just working up the courage to ring them as I know I’ll probably just end up sobbing and won’t be able to get any words out!

You’re not alone, although there’s few who have diagnosis of patau, there’s others that have other diagnosis of incompatible with life and there’s many people who have gone through/ or are going through what you are. The relief of seeing a live baby on ultrasound thinking everything is great and then the shock at receiving such a diagnosis. It happens to other people, not you. But there are a range of medical issues that unfortunately lead to the same outcome.

I had a scan and made my decision before results from CVS care back as from scan alone consultant said baby was very poorly and would miscarry on its own eventually. CVS came in the day I was in hospital for tfmr and was told it was t21.

Thinking of you, it’s truly heartbreaking. You’ll come out the other side though, we all do. Keep strong x

Thank you for your kind words Faras, as rubbish as I feel at the moment, they’ve made me feel a little better. I’m so sorry for your loss as well but glad and encouraged that you made it through and came out the other side...😊

If it helps my experience was pretty much the same. High nuchal, CVS, t21, we had a tfmr. Baby was unwell with hydrops.
That was in 2011 and I don’t think about it much now. I have a 6 year old DS and having him healed me.
Keep talking to us if it helps

Thanks for your message Chrisinthemorning, sorry to hear about your loss but lovely news to hear that you now have a 6 year old, that’s definitely encouraging x

I'm sending you the biggest of hugs. Though I know that's no comfort.
We're currently awaiting our results.

ARC are great and will be able to just talk even if you're crying.
I'm so very sorry xxx

Thanks @treaclepie19 I’ve been thinking of you as well and am really hoping that you get a good result. The waiting can be the worst, hopefully you’ll get the results quickly. X

Thank you @Ceallaigh ❤
It will be Monday for our first set of results now. Then the amnio. I'm glad we will know something next week.
I'm here if you ever want to talk xxx

Hi

I'm so sorry.

My daughter had Edwards syndrome (a similar issue).

You mentioned in you post that you didn't feel like you had options, but I wanted to let you know that may do, even if they weren't the options you were hoping for.

I know Patau's and Edward's aren't exactly the same, but the prognosis is almost identical, I think.

It's not a choice you ever wanted to have to make, but you do have the option of whether to continue the pregnancy. Your consultant will be able to tell you how the Patau's has affected your baby, what's likely to happen if your baby survives the birth and should be able to arrange for you to meet with a neonatal doctor to discuss what's likely to happen if your baby survives the birth.

I can't tell you what the right decision is - I can only tell you that we decided that, based on how the Edward's syndrome was affecting my daughter, we decided to continue the pregnancy.

We lost our daughter during the birth, but we found it easier to deal with knowing that we made the right decision for us and our baby.

The decision that we made isn't necessary the right decision for someone else - only you can make that decision.

Whatever you decide, ask about the bereavement midwives at your hospital. It's really useful having someone to contact when things are tough or when we needed an answer about anything. They will also help you plan for meeting you baby - what memories you want.

We spent a day and night with our stillborn daughter, bathed her and read her stories. We bought clothes to dress her in, I had a necklace where she had half and I kept half and we had a couple of comforter toys to stay with her and an identical one for us. Having these memories has made it easier for us. In a way I feel lucky that we had the opportunity to have these things ready.

I hope you have the support you need to make the decisions you need to

So terribly sorry for what you're going through

@n3wn4m3 thank you for taking the time to share your story. I’m so sorry you had to go through that, you sound like you have incredible strength. I hope that you are doing well now.

We’ll wait until we get the results back on Friday and what the doctor says and then go from there.

Xx

Thanks @Lindah1

I’m sorry to hear you are going through this. I went through this recently, our son had Edwards. It was such a shock and I felt an all consuming sadness I had never felt before but time is a healer and it does get easier to live with xx

I'm so sorry I have a close friend who has gone through this who is now a mum of 4. We still talk about her baby though and it helped her at the time to be able to prepare slightly although that seems to sound flippant. Thinking of you x

I am so sorry to hear this. It is such a terribly sad and difficult thing to go through.

Our first son had Patau's syndrome. We had a tfmr. It was the right thing for us, but it was the hardest time.

We now have three children. They know about their older brother and sometimes ask about him.

So sorry. I went through the same and it was devastating. Just couldn't believe it was happening. As a pp has said, Arc were really helpful, .

That was 15 years ago, and i now have 2dc. We planted a white rose in the garden all those years ago, which is still flowering.

I remember thinking that there was nothing anyone could say that would help, but Arc were really good in answering my questions.

Thanks so much for all your comments guys, as sad as it is to hear your similar experiences, it definitely makes me feel less alone in this. Xx

Unfortunately been through the same. It’s devastating. We had tfmr for patau, following NIPT and CVS last year Such a dark time for us. Thinking of you xx

@reallyreallyreallytired I’m so sorry to hear that, thank you for you message. I’ve sent you a PM. x

Thinking of you today Ceallaigh . Hope you have some good support IRL. I remember how difficult it was for me to tell people, especially as none of them had heard of Pataus. It made me even more upset to make them uncomfortable. I remember in the end DH and I spent hours walking round the gardens at Chatsworth just to avoid people seeing me cry and having to explain.

The hospital staff were fantastic when I went through TFMR. I was dreading everything about it but they looked after me very thoughtfully and I will always be grateful for that.

A pp said that we all come through it, and we do.. but it was such a sad time. All i can say is just take one step at a time .

Treacle.. thinking of you too.

Thank you @wizzler ❤

@wizzler thank you for your positive words. I’m sorry to hear you went experienced this as well but I’m glad to hear you came through it. Xx