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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

Trysomy21 / downs syndrome

43 replies

Trysomymumandproud · 13/10/2019 19:39

Hello
This is the first time I have posted and probably be the last. I don know where to start but I want to share my story. Last year we gave birth to twins, this was an emergency c section and the babies were prem. Through pregnancy we declined screening as we always said what will be will be and we wouldn't ever terminate. Here we had two beautiful little boys in their incubators so perfect and so precious. The following day we were taken aside and given the news that the Dr had suspected one of our boys to have d.s. ladies and gents if you are ever in this situation u may react like my husband so strong, where as I crumble slightly and I don't know if It was hormones or fatigue or what? Looking back I believe it was jumping the gun forward and worrying about the future. Now after digesting the info and recieving the diagnosis as Trysomy 21 the pride I have for our little boy has done nothing but grow. Each day I have watched these twins perfect fingers and toes and hands grow along with their characters and our little boy Bob's has grown so much courage and strength that I can't help but burst with pride. To those of you who may have had a diagnosis or any screening results you are not alone and please don't be scared, I was and why I do not know because d.s is nothing. It's a name for something that will never define who our child is or will be what will define that is the strength and personality of our boy. Trysomy 21 isn't the end of the world, it's a life long adventure. We are only 15 months into ours as a family and our boy has kept us on our toes.we have been in hospital a while and also at GOSH We have gone through the health complications and are still on that bumpy road of twists and turns and also a long path of learning about all the medical stuff our baby needs, We have always been proud of our boy. So here's to the first year of adventure, it's been raw, it's been difficult, it's been highly rewarding and filled with unconditional love. It's been a worry. We wouldn't change a thing. And if you ever stumble across this Bobby in years to come. We could never be more proud to be parents to our little shotgun. From a mummy and daddy with 3 bambinos under 28 months life is crazy and life is hard but we wouldn't have every had our life without our shotgun, he has made parenthood that bit more of a joy due to the extra chromosome in our boy. XX

OP posts:

Venger · 14/10/2019 21:13

And by "100% of women" making the decision that is right for them, I am also referring to women who continue their pregnancy as well as those who do not.

ArcticHair · 14/10/2019 21:32

Lets not be like Iceland where 100% of ds babies are aborted

Just so you know, this is not true. www.downs.is

I would guess this 'fact' seems to stem from a misunderstanding of 100% of cases ending in abortion in a given year, but the population in Iceland is very low so the total number of pregnancies in a year is correspondingly low. 100% of a few cases is obviously not as statistically significant as 100% of several hundreds or thousands of cases.

OP, congratulations on your son, he sounds great :)

june2007 · 15/10/2019 20:04

I hope your right about iceland.

hellenbackagen · 15/10/2019 20:11

The issue for me is the severity of the condition is a complete unknown. I couldn't take the risk as a single parent of 45 as sad as that still makes me.

Some children are hardly affected while others are and there's no telling. I would never ever have rested in my grave knowing there was no one to take care of my dd when I died. If that condemns me then so be it . What I did was out of 100% love for my little girl.

Wonkydonkey44 · 15/10/2019 20:27

Congratulations on your beautiful babies

whiteroseredrose · 15/10/2019 20:32

My concern would be about the longer term future.

Babies are one thing. But what about when they're 50 or 60 years old? Parents may still be needing to look after them - if they're still alive.

There was a thread on here some time ago where siblings of DC with Downs were describing their parents' fears about what would happen when they died. There was an expectation with some that the siblings would take on the burden. Some were fine about it but not all. It didn't seem fair to me to expect one child to sacrifice their own life opportunities because of a sibling's needs.

Basil90 · 15/10/2019 20:34

Your post is misleading. There are varying degrees of syndromes and some children's lives are so negatively impacted by the hand they've been dealt. Also please be mindful of the women who have decided to terminate on the grounds of screen test results

BananaBooBoo · 15/10/2019 20:39

Oh this is so lovely to read. All the best to your fantastic family.x

hellenbackagen · 15/10/2019 20:43

And I will add my results were confirmed by a very painful cvs . I waited because I wanted
screening to be wrong but it wasn't. Terminating that pregnancy remains the thing in my life that gives me the most pain of anything I ever experienced and that includes my ds diagnosis of autism and nearly losing him to meningitis. It's my biggest sadness.

Catapillarsruletheworld · 15/10/2019 20:43

Congratulations on your beautiful twins. My nephew is 4 and has Down’s syndrome. He’s the most amazing little guy I know.

Andysbestadventure · 15/10/2019 20:45

You got lucky OP. 21 is a spectrum. My cousin is basically a shell of a human being, requiring life long support. If his mother had access back then to the NIPT like we do, and known what lay ahead, she would've aborted straight away.

I'm mid 30's and if I ever have another baby and the NIPT shoes anything wrong such as downs, I will be terminating straight away. I can't see why anyone would ever want such a difficult life for their child.

Andysbestadventure · 15/10/2019 20:46

Shows not shoes* bloody auto correct

18995168a · 15/10/2019 20:54

DS is absolutely not ‘nothing’. It’s lovely you’re so proud of your family OP. But, with respect, you’re only fifteen months into parenting a child with DS: you’re not in a position to tell other parents that DS is nothing when your twins aren’t even a year and a half old.

I sincerely hope for you that your child’s DS impacts his life as minimally as possible, but even if that’s the case it’s still not true that it’s no big deal across the board. There are many complications that can arise with DS into adulthood and so often all that’s portrayed in the media is the more publicity-friendly side of Downs Syndrome: smiley, happy toddlers who brighten the lives of all around them and who never have a sad moment. This thread isn’t the place to go into the harsh reality of living with DS for many individuals, so I’ll leave it there and say I wish you the best on your journey as a family.

SomethingNastyInTheBallPool · 15/10/2019 20:56

Congratulations on your twins, OP! It’s really lovely to read such a happy, positive post about DS.

My DD is 5 and is the light of our lives, but I wouldn’t agree that DS is nothing. I now spend a massive proportion of my life thinking about her health, care and development (she has had some serious health issues and has an autism diagnosis).

But what I didn’t realise before I had her (postnatal diagnosis) was how much I could love a child who wasn’t what most people perceive as perfect, or how bright, sparky and fun our children are. So I completely agree that parents who find out they’re expecting a baby with T21 deserve to be given a far more rounded and up-to-date picture of the sort of life a person with DS can expect these days, as it may well be much more normal than they realise.

18995168a · 15/10/2019 20:56

You got lucky OP.

There’s no way of OP knowing just fifteen months into parenting her DS child whether she’s been one of the luckier ones or not, sadly.

I’m of the same mindset as you.

It is indeed misleading to say DS is nothing, and quite insensitive to people who’ve chosen to terminate for DS, it’s a shame OP hasn’t returned but perhaps she knew her post would lead to a difficult discussion on the issues she raised.

Gilbert82 · 15/10/2019 20:57

Any child can have a difficult life! Not having Down syndrome doesn’t guarantee perfect health and development!

Congratulations OP we also had a postnatal diagnosis of DS, our little one is the best thing to have happened to us and we wouldn’t change anything about him

18995168a · 15/10/2019 20:59

Any child can have a difficult life! Not having Down syndrome doesn’t guarantee perfect health and development!

I haven’t seen anyone make that assertion, Gilbert :)

AgathaMystery · 15/10/2019 20:59

Congrats on your lovely children OP.

Iceland: had, the year of the '100% aborted' stat, Two T21 pregnancies diagnosed. So there's a bit of context.

I think we are better these days with our wording. We are moving towards 'chance' not 'risk' but some labs who have NHS England contracts will not change their wording & that is their choice.

That said, like all syndromes T21 is a spectrum and of the hundreds of women I have met in the past decade having CVS/amino, none terminated their pregnancies lightly. T21 is not 'nothing' - although it is, generally, the least dreadful syndrome we often see.

I was part of the team who worked towards developing NIPT for the NHS & It affected us all very deeply.

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