NT thickness, is there hope for us

[Hattieb26]

I am so weak right now, but having read some very hopeful threads on here I thought that maybe you could give me some hope under my current situation.

We had planned to have a baby, with me being 26 and my partner 35 we felt we were both ready to be parents. We fell first time and I have been so fortunate to have no sickness and I have been fairly energetic and well throughout my first trimester. I have absolutely taken this for granted and now my world has crashed.

I had a scan at 6 weeks to detect a healthy heartbeat and to check for twins as we have them in our family. A healthy heartbeat there we waiting until 11 weeks and 5 days for our next scan. The midwife confirmed how well baby was, active and how she had no concerns.

We then had our 12 week scan at the NHS and my world shattered. With a NT measurement of between 6.1 and 7mm we are in the highest possible risk category. To think I wasn't even going to have the screening at first is awful. I had taken my health for granted and seeing baby so well just 4 days before, no fluid was detected at all.

The fluid extends down babies back, which is the possible beginning of a cystic hygroma. This also puts us right up there with abnormalities.

We have seen our baby today, happily kicking and showing us their hands. That perfect silhouette and the growth progression is just right. The heartbeat strong, yet our baby is potentially very unwell.

I am waiting for CVS, but I wanted to post this for some hope but also to remind people not to take their health for granted. I had assumed my youth and my physical being to be enough to have a perfect child. I hadn't even realised this could happen to us and now it is, I'm still hopeful this baby will be OK.

The NHS gave me nothing but a termination leaflet and a piece of paper to confirm the abnormalities, they even gave me my scan picture for free out of sympathy. A quick in and out visit for formalities turned into the worst day of my life so far.

Hi Hattieb26
I’m really sorry to read your update.
What a shock you must be in.
I really hope you have some supportive people with you.

Oh @Hattieb26 I'm sorry to read your update.

I believe there is a thread or section on MN for parents of down syndrome children. Just if you were interested to read. Also, you are still young so you have options. I hope you have lots of support and wish you lots of strength at this time.

. I wish you strength to make they right decision for both of you, no matter what it is.

What a shock for you both, I think most people just assume they will have no complications so you're certainly
Not alone there. Hope you can come to a decision you're at peace with either way

@Hattieb26 I’m sending you so much love x if you want to message me personally I am also dealing with some very difficult scan news from last week too xx whatever you decide next must be the one that’s right for you xx sending you big hugs xx

How are you doing ? @Hattieb26 I've been thinking of you x

Hello everyone I just wanted to update you as whilst I have spent the last week in a rather miserable and distressed state. I have decided to continue with my pregnancy and raise her as best I can.

I have absolutely no judgement on anybody who would of decided to terminate as this too crossed my mind in such a way that I had almost gone through with it. I'm very proud to say that even though she isn't the little girl I had imagined, she is still our little girl and we are blessed to of experienced pregnancy at all.

We decided to name her as in all honesty, being pregnant with trisomy 21 can lead to all sorts of complications and we want her to have an identity. Her name is Poppy and she is different but for me and my partner, she is our daughter and we will do our very best xx

Awe great update. I love the name Poppy!!

I think you've made the right decision for you and I think you're little girl will be just perfect as she is :) xx

@Horehound thank you so much. I can honestly say, until you fully explore your emotions and the options and support and you really ask your soul what you want, you cannot make a decision. I rushed mine and then fortunately, spent several days entirely alone to talk to myself to find out what my heart desired.

Little pops will have the best life we can give her xxx

@Hattieb26 I love your post so much xx what a lovely happy update x poppy is the sweetest name & sounds like she is super blessed to have you & your partner as her parents x hope you can enjoy the rest of your pregnancy now & are excited to meet your pink bundle xx :)

Thank you for a beautiful update. Poppy will always know how loved she is.

Oh @Hattieb26 what a post, full of love. I have great admiration for you
Whatever hurdles you and little Poppy have ahead, may they be small and you leap together.
Wishing you the very a best for your future as a family together.

@Hattieb26 this is so lovely to read! Wishing you and Poppy all the very best! Xxx

@Hattieb26 this is a lovely update. I wish you all the best with baby Poppy. The love you have is already very clear and that makes her a blessed little girl xx

I don't have a child with Down syndrome myself but a good friend does not on Mumsnet, I mentioned this thread to her and she wants to reassure you that for most people with Down syndrome they have a pretty normal life now - education is far more enlightened so they get a chance, her dd is a young adult and starting college in September, living in halls independently. Health problems are more common but as she said to me, they can happen in any child, and girls tend to be easier too (she's bias). Keep us updated - it's a huge unknown for you, finding out your child isn't "perfect" causes complex emotions, took me years I admit. Best wishes

I feel genuinely quite touched by all of your lovely comments. All three of us thank you so much for these kind words of support.

Truly, I am so grateful to everybody. I'd not of managed to get through this without the messages and comments I have had. This is the true meaning of pulling together to get through tough times xxxx

My neighbour Chloe is 32 has Down’s syndrome and does very well with support, be encouraged

Lovely name OP. There are so many great resources out there and blogs/websites written by people who have children with Down’s syndrome. Having a child who is ‘different’ has so many positives, and it is brave to carry on with the pregnancy and you will love you daughter so much. We have a child with a genetic disorder and life is good & we are happy. Good luck!

Oh @Hattieb26 your update made me cry happy tears can't imagine what you have been through but I'm just a stranger online and I can tell Poppy is very lucky to have you as her mummy x

OP I recommend the blog and FB page "don't be sorry". Written by Oscar's mum. Oscar has DS.

Aw, Poppy is a beautiful name! Someone I know had a little girl with Down's Syndrome last year and she is the absolute love of her life! She is a gorgeous, smiley, happy, adorable little bundle and she made me feel so broody when I saw her in photos. Her parents are absolutely head over heels in love with her and I can see what a bright light she is in their lives. I also know another child with Down Syndrome who not only attends mainstream primary school but is fully bilingual and has the most tenacious, strong, playful character. Everyone loves her! Although there may be some hurdles and challenges, there is also a lot of laughter and joy in your future with Poppy!

I have a little boy who has moderate learning difficulties and some health issues so although he doesn't have downs syndrome, his needs are very similar. He is amazing and at aged 8 is in mainstream primary school with an ehcp. He struggles with writing but is doing well with reading and is the loveliest person I know.

I’m sorry for all the heartache you must be going through. Poppy is a wonderful name and she will be a wonderful girl.
I have worked with children who have Down syndrome and when the study came out to say they are the happiest population group, I was not surprised. Everything I’ve experienced has indicated that children and adults with Down syndrome love life and escape many of the complicated stresses so many of us go through in our over-complicated modern world. I wish your Poppy to bring you much joy ❤️

Hi @Hattieb26. I have a baby with Down syndrome which was a huge shock as we had no idea antenatally. She’s gorgeous and doing so well with no real health concerns. The best thing I did, through the fug of fear and worry when we first got the diagnosis, was to get in touch with Positive About Down Syndrome (PADS). They have a closed facebook group for expectant parents and one for new parents too. It’s the most supportive, wonderful place, with no judgement. They’ll hold your hand through all of this and listen to any fears or worries you have. Hand on heart it’s not what I thought I would have chosen and definitely not what I’d imagined or planned for, but my daughter has already enriched our lives so much and taught me a huge amount. Her older sibling adores her. The shock settled after a month or so and now we are a happy, normal family with a perfect baby girl who is thriving. Please look up PADS and know we’re all out here for you and your baby xxxx

Hi everybody!

I think its worth posting now I am half way through, I just wanted everybody to know I am in no way sad or hurting, or in any pain whatsoever. I am fully embracing my pregnancy and I am very excited to have our baby girl who happens to have down syndrome.

It is amazing what some time, research and making friends with parents of babies with DS and actually meeting and holding babies with DS actually does. I am nothing but excited to meet her and have no sadness or shame in her diagnosis.

My original panic was terrible and unfortunately, completely fueled by terrible advice from the hospital I had my first scan at. I suffer only for what "could of been" had I of listened to them and aborted my beautiful girl.

We have had a 3D scan and seen her beautiful face and we are so in love.
If anybody goes through what I did, I would suggest a charity and facebook support group called Positive about Down Syndrome (PADS) because they know the truth, with real experiences and people you will be better informed than listening to somebody who doesn't know you xxx

All the best!!