Increased risk of Edwards and Pataus

[Liara1512]

Hello, Im just posting this and I feel so alone and have nobody to talk to that can relate to how I’m feeling right now.
I am 12 weeks and 4 days pregnant with my 2nd child. I went for my first scan at 11+6 weeks where I had the screening test done and sonography this found an increased NT measurement of 5.3mm. I was then sent for another scan with a consultant the following day where she explained to me there is a 1 in 3 chance of my baby having a chromosome abnormality. Today I received my blood test results via phone call from the hospital and they have now told me I am low risk for Down syndrome and high risk for Edwards and Patau. I am completely terrified I am 22 and didn’t even expect anything like this to happen. I just wondered if anybody had similar experiences they could share as right now I am completely confused and scared. I am booked in for an amniocentesis on the 25th and don’t know what to expect with that. Any replies would really help.

I lost my daughter to Edwards last year. We found out after the 20 week scan and decided to continue the pregnancy. It was absolutely the right decision for us at the time.

Please feel free to pm me if you would like to talk about anything.

I'm sure you've been told the chance of stillbirth is high. We hoped that we would be one of the lucky ones, but planned not to be, which I think helped us.

I would recommend thinking about what you want to happen if your baby is stillborn. We had some stories to read her, bath things so that we could clean her, clothes and nappies for her to wear, a teddy to leave with her and a teddy for us, a necklace in two parts so that she has one and we have one, a way of taking a print on your baby's feed, etc. Make sure you take plenty of photos even if your not sure if you want them - looking at them makes me equally happy and sad.

Find out who your hospitals bereavement midwives are, also Sands are great. In the midlands we have the Lily Mae foundation, a charity that provides memory boxes for stillborn babies and support for parents. If you're in the same area I would recommend looking them up.

Most importantly, enjoy this time you have with your baby. Talk to them and spend time with them. Take photos of your bump. Sing songs and read stories.

@moita Thankyou that’s lovely xx

@edwardsadvice Thankyou so much for sharing your story, it’s heartbreaking but it sounds like you found a way to find peace and that’s so beautiful. You’ve given me some wonderful ideas, things I didn’t even yet think of but will definitely do. I’m expecting a phone call off the bereavement midwife any day to go and meet with her. I am in the midlands im going to look that up right now Thankyou so much for the information and for some beautiful ideas I can do to make memories with my baby, honestly you’ve been so helpful x

Hi. My dd had Patau syndrome and was stillborn at.32 weeks. Continuing the pregnancy was the right thing for us although we faced a lot of challenges. There is support out there but you have to look for it. Please please get in touch if you want to talk about anything at all.

@neveradullmomen, bless you so sorry to hear, there’s no easy way is there to deal with any of it, I think unless you’re in the situation yourself or been through it you can’t understand how difficult it is to make such big decisions. X

NeverADullMomen I think my peace is exactly how I'd describe it.

It won't seem like it now, but looking back a year later, I feel grateful for knowing what to expect in advance so that I could be prepared and make the most of the time I had.

I'll be thinking of you and hoping that everything goes the best that it can for you

Sorry - I meant Georgia1512

@edwardsadvice I think you’re exactly right I want to be prepared just like you say so my time can be spent focusing on the time with the baby and also making it be as smooth as it possibly can be for 3 year old, you’ve really made me think of things I haven’t yet even considered and I appreciate it.

Hi. I had a baby with Edwards syndrome who was stillborn. We found out after 20 weeks and knew due to substantial fluid on the brain, that he would be born asleep.
I agree with the others advice on taking lots of photos, having some things for baby and hand/ foot printing stuff.
Our hospital provided some memory box things and the chapel had a book of remembrance, that on request made a special page for our baby.
We had his remains cremated, the hospital arranged a service at the crematorium.
I remember dreading the birth however it was not all awful as I had expected. We spent 2 days with baby, just cuddling and seeing who baby looked like, talking to him...the sort of things you would do after a healthy birth. There were smiles as well as tears- it wasn't at all how I thought it would be.
Maybe you could ask the midwives what procedure is for baby's born alive with Edwards, what help will be offered, if baby will go straight to special care. It helps to know what to expect.
Rightly or wrongly- I got pregnant very quickly after this, I just really needed to for myself, never to replace him.
Sorry I can't offer any advice on how siblings will react to it all- he was my first.
I wish you all the best for the future and for your baby, sorry you are having to go through this.

I'd missed that you've got a 3 year old. In that case... more advice...

The sands guidance for talking to children is excellent. Mainly using the very blunt terms like "died" so that they understand exactly what happened. We made a big deal of "baby died because they were weak, not big and strong like you were when you were a baby" rather than mentioning being ill, so that he didn't worry when he was ill.

We told his nursery as early as possible and kept them updated so that they could support him. We made sure everyone that looked after him knew the terms we used.

It's fine to be upset in front of your three year old. We just explained that we're sad because we wished that the baby could stay with us and we miss her.

Expect to talk about death at very awkward times because three year olds don't wait for an appropriate time. Currently we have lots of talking about siblings and checking that our daughter is still his sister - I think because all his friends have siblings.

We opted not to introduce our son and daughter. We had explained in advance what would happen and he accepted that. My only regret is that I don't have a photo of them together, but I'm happy that I made the right decision for us. That might not be the right decision for you and your family - you need to do what you feel to be right.

Just echoing all that is above. We had a birth plan for stillbirth as well as born alive and were practically quite prepared. I bought the tiniest clothes I could find so that I would have something to dress her in and made a blanket to wrap her in. That was buried with her in the end. No one wants to be planning for the death of a baby but doing so definitely helped us.

@lifeoflimes, so sorry to hear of your little one, I find it beautiful that you made as many memories as you could, that is something I’d definitely like to do, if I’m honest I am really scared of how it’s going to affect me but I know I’m my heart to continue the pregnancy is the right thing for us, and it seems the least traumatic to me personally. My midwife at the hospital has been exceptional, she’s going to arrange for me to meet with paediatricians to discuss the after care and things like that as at the minute I’m not sure exactly what the care would entail. I find it lovely that you got pregnant again, there’s is no right way of handling things in this situation and I completely understand why anybody would chose to have another baby soon after. Thankyou so much for giving me advise and information it’s greatky appreciated.

@edwardsadvice, thankyou I will get in touch with them too, at the minute she keeps asking me if her brother or sister is coming soon as we told her quite early on that we were expecting, I just tell her I’m not sure as I’m worried of her having any concept of death at such a young age. I’m in the same predicament as you, I feel I’d love a photo of her and the baby together but I don’t know if that’s something we will chose to do or not.

@neveradullmomen, I think your exactly right, it’s not exactly what people like to sit and talk about But unfortunately for us and people in similar situations, it’s such a big thing to be prepared for, I’m going to definitely do as you have and make two birth plans after meeting with the bereavement midwife and the Pediatricians as I think they can also offer me advise. Thankyou

How are you doing, OP?

Vika1985 sorry I’ve only just seen this, Im ok yesterday was a hard day as we found out by the full results of the amnio that we’re having a little boy, it’s crushed me as this is not as I imagined having my first son would be, I’ve got a meeting with the bereavement midwife on Tuesday so hopefully she will be able to answer some questions for us.

Georgia, you sound so incredibly strong.

Can I recommend the charity "remember my baby". They send professional photographers to take the most beautiful pictures for you once your little boy has been born.

I would also recommend contact with your local children's hospice. Whatever the outcome they will be able to help support you and your family. Your midwife can sort this all out for you.

@putputput Thankyou so much, I will definitely look into them now it sounds like a lovely charity and i definitely want some photos of him, my midwife is going to arrange us meeting with a paediatrician which I think will be useful for us to understand what care etc he will be needing.

Just a quick one to see if anybody could help me, I have no clothes for the baby yet and obviously I’m going g to need to buy a few outfits to prepare, is the baby most likely to be premature? What size clothing should I buy, premature or first size?

We bought things in a few different sizes, you can get stuff online for babies as small as 1lb. In the end, our wee one wore early baby clothes and we donated the smaller, unused things to NICU. We didn't get loads of tiny things, just wanted to make sure we were organised. Also, we bought two of the same little soft toys so that we could have one and so could our baby. They have them in the memory boxes but i wanted to choose our own.

Are your hospital being supportive?

If you Google 'micro premie clothes' you get a few different websites. I think we chose one outfit in 1-3lb and then one in 3-5lb. Just meant we felt organised for every eventuality xx

Sorry, I just realised hadn't actually answered your question. Our baby was born at full term, 40 weeks, but was quite little xx

@vika1985 Thankyou that’s really helpful I think we would do the same with any un used clothes and donate them, it’s good to have different sizes ready just in case. I absolutely love the idea with the teddy I think I will do the same thankyou for that. In terms of the hospital I really can’t fault the staff I’ve seen, they’ve been supportive and helpful even when I’m ringing them and feel like I’m annoying them they assure me that I’m not.

Even if your baby isn't premature, they are likely to be smaller than average because of the Edwards syndrome. My daughter ended up being induced at 10 days past full term and was only 5lb. Premature clothes would be a good idea. We got a couple of things in each tiny size they made, up to newborn.

@edwardsadvice Thankyou so much for your help, I thought that would be the case of him being smaller I will order some in various sizes. Thankyou.