The rollercoaster continues.... - Fertility Network UK

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The rollercoaster continues....

sipidania profile image
22 Replies

Hi everyone

So we've had a pretty stressful week. After a good scan at 12 weeks and then a positive meeting with the obstetrics consultant we finally thought we could start to relax.

But unfortunately our combined test came back as high risk and we then went on to have the SAFE (NIPT) test as our hospital offer it already and then when that came back high risk we had a CVS (invasive) test.

The results are in and the diagnosis confirmed, our little baby will be affected by Down Syndrome. It was a huge shock and it has felt very unfair after everything we've been through, but actually, now, a few days in, we are coming to terms with it and starting to feel positive again. Yes it is a life-changing condition and yes our baby will face some challenges that other babies may not have to face - but it is still our baby and we are determined to love it and give it the best life we can.

We've since spoken to our IVF clinic who agree that with our remaining 4 embryos we can do genetic testing on them prior to transfer next time around - which means they take one of the 8 cells from each and do a biopsy on it - as Down's is a condition marked by an extra chromosome it is a relatively straightforward thing to test for (mad as that sounds as I think this science is just incredible) so at least we can try and avoid this happening a second time.

But for now, I'm just going to focus on growing this baby the best I can - next thing for us is a cardiac scan of the baby next week as (usually fixable) heart problems are common with DS babies

Xx

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sipidania profile image
sipidania
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22 Replies
Daisy-Mae profile image
Daisy-Mae

I just want to send you a message of support and offer a virtual hug. You have really been through a lot and this is obviously a shock, but I think you have the right attitude. Your baby is a beautiful blessing to you and even with the challenges of Down's syndrome, will enrich your life and make you happier than you ever thought you could be.

I hope your cardiac scan goes well next week and I wish you a healthy pregnancy. Sending you so much love and support xxx

sipidania profile image
sipidania in reply toDaisy-Mae

Thank you Daisy-Mae xx

An extra special baby then xx

vic77 profile image
vic77

Daisy Mae said it so well and it sounds like after the shock you are both being very positive. All children enrich our lives and your baby will be loved and love you and that is all that matters.. good luck for next tests xx

Special babies are sent to special people. I'm a great believer in that as I care for many special babies and am always in awe of their parents.

There will be a few more hurdles for you all to overcome but I'm sure you'll do just fine. There are Down Syndrome support groups available to help, especially as you'll have lots of questions I should imagine.

Good for you for focusing on the now and I wish you all the best with the rest of your pregnancy xx

sipidania profile image
sipidania in reply to

Thankyou hellsbells. I've spoken to the Down's association who were amazing and have also managed to speak to two mums, one local with a 7 month old and one in the US who is a friend of a friend with a 5 yr old and both of them were really encouraging and positive while also being pragmatic which is just what we need right now. Thank you for your vote of confidence :-) x

Mantaray75 profile image
Mantaray75

This baby will be so precious to you Downs or not. Read the 'Welcome to Holland' poem written by someone with a Down's child. Hope the rest of pregnancy goes well. x

sipidania profile image
sipidania in reply toMantaray75

I've read it and it makes me cry everytime but you know what, we went to Holland to one of our first mini breaks together and we liked it just fine. Knowing the plane is going somewhere different than you expected before you land I think is helpful despite the shock now too, we know our journey will be different - not worse but different. And we already know we love Edam :-) xx

sanj76 profile image
sanj76 in reply toMantaray75

Wow I've just read this prom... it's beautiful

sipidania profile image
sipidania

You people are amazing. I wasn't going to post cos I was scared I would get a negative reaction but you've proved my fears unfounded and your words of support have made me cry (again!)

This group of all people understand the tough journey we follow to get to this point and I really appreciate the support. I'm terrified of the prejudice and negativity my child may face in the future and termination with this diagnosis is now so overwhelmingly common here in the U.K. But I just can't do it to a little person I've now seen wriggling on the scan 4 times and been listening desperately for its heart beat since it was a 6 week embryo and tracking its progress since it was just 8 cells big!

Love and baby dust to you all

Xxx

I can understood this must have been a shock, but you are blessed with a special beautiful baby who will want for nothing. Don't let your fears take away your excitement and joy 💕💕💕

Strawb86 profile image
Strawb86

Whilst this little one will have some challenges, I just wanted to say that children with DS have been without exception amongst the most joyful and loving children I have ever met. I am sure you will give them a wonderful life xxx

Georgina78 profile image
Georgina78

I think Daisy -Mae has put it beautifully, it's a huge shock and feels very unfair after what you've had to go through but you definitely have the right attitude, your lovely little one will be happy with great parents like you and although there will be challenges, he or she will still be a huge blessing. Lots of luck with your scan, I hope heart problems won't be an issue. Huge hugs xxx

sanj76 profile image
sanj76

Hey Sipidania, firstly thank you for sharing, this is always a concern for mist and as you say is very much a major shift at in life change. However as you have clearly pointed out, this is your baby in whatever capticity and you will do what ever it takes to bring it into this world.

I have no doubt you will love this child unconditionally. I wish you continued success in the future.

MonkAK profile image
MonkAK

Sipidania, your post has made me cry! It is clear that your beautiful baby will have a fabulous life filled with love, which will no doubt make any challenges he or she will face all the easier to overcome. Wishing you all the best for your cardiac scan and for the rest of your pregnancy. XXxx

MommaBear16 profile image
MommaBear16

Children with DS are a wonderful gift, the joy and love they bring to the lives of those who love and work with them is overwhelming and I am sure your baby will be no different. Take care of yourself and each other as your progress through your pregnancy, I am sure you will have a lot of support to come your way but I am confident you will make amazing parents, you're doing incredibly well so far. Sending so much love and wishing you all the best x x x

Sending you virtual hugs.a child is a gift and that little one will bring you so much joy and that's all that matters .

DC13 profile image
DC13

You have a very special baby and they will be cared for and loved greatly. Everyone that I have met with this condition are amazing, happy, caring and beautiful people just like your little one will be.

Yes you will have more hurdles to overcome than others and maybe the route is slightly different that initially hoped but with support and love anything is possible.

Wishing you well for the heart scan next week.

As others have said here. Your baby is a special gift and miracle.

Xxx

City74 profile image
City74

Just wanted to send you lots of hugs and all the best for the rest of your pregnancy and of course the heart scan next week. You will make great parents and your special and miracle baby will be loved so much. Let us know how you get on. xx

sipidania profile image
sipidania in reply toCity74

Thankyou! X

vonny27 profile image
vonny27

Just want to say your a strong woman who I'm sure will progress into an even stronger woman. I'm 40 years old with my first pregnancy and I'm scared to death to have the tests. Good luck with next week's test. Big hugs xx

Cinderella5 profile image
Cinderella5

Wow what a trying time you guys have had! You are both strong willed & will be great parents!! Wishing all the very best, your beautiful baby will have your fighting spirit that you both have!!xx

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