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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:
Bellecurves · 13/10/2019 19:50

What a lovely post.

Stuckinanutshell · 13/10/2019 20:03

Congratulations on the birth of your twins. They sound loved beyond measure. What a lovely family you sound. Beautiful post also. X

hungryhippie · 13/10/2019 20:06

Beautiful post!
Your family sounds lovely.

NemoIsLost · 13/10/2019 20:12

What a lovely post, the love for your boys shines through!
I know twin boys who both have T21, they are such a joy to be around
♥️

Ridusofyourstupidity · 13/10/2019 20:28

My son has DS, he’s almost 10, and acing year 5 in mainstream school. He’s seriously one of the most beloved children there from the top to the bottom.

I got told he’d never walk, talk or attend mainstream. I told them we’d see.

Grin congratulations on your twins, and enjoy the next few years, it’s never boring I can tell you!

CAG12 · 13/10/2019 20:44

This is such a refreshing opinion on a matter that terrifies most

I wish you all the best 🙂

Jeschara · 13/10/2019 20:52

Lovely post, congratulations on your 3 lovely children.

pontiouspilates · 13/10/2019 20:57

Congratulations on your beautiful twins. I love your post. I often work with children with DS. Some have more health issues than others, but I've never yet met a child with Downs that I haven't thoroughly enjoyed working with.

hellenbackagen · 13/10/2019 20:59

Difficult for anyone like me who terminated for t21. Lots of reasons and my circumstances were I'd have been alone at 45 and the burden would have fallen to my older dc in the future. I'm very glad it worked for
You and I have many regrets. I feel I've been punished enough I'm now alone. Dp didn't want me to continue . Then we split anyway. Sad

Wheat2Harvest · 13/10/2019 21:01

First, congratulations on the birth of your twins!

Second, ".... because d.s is nothing."

I beg to differ. I have a DD (now 18) with Down's who attends a special school. (She attended a mainstream primary but by 11 the learning gap between DD and her peers had widened to the extent that a special school was the preferred option. One needs to be realistic.)

There is great variation in how children are affected by Down's. About half will have a heart condition (and about 1 in 5 will have a serious heart condition such as tetralogy of fallot).

To say that Down's is nothing is, in my view, misleading as while some individuals are able to function at a higher level (and I do hope that your son falls into this group), others will be severely learning disabled, non-verbal and have bowel and/or mobility issues.

june2007 · 13/10/2019 21:04

Wow why were you told a child with ds would never walk, talk or go tao mainstream school. Had the doctor not met anyone with ds before? Or had they only read info 40 years out of date. No wonder 90% of people choose to abort with such rubbish info.

sunshine5997 · 13/10/2019 21:04

♥️♥️♥️♥️♥️♥️♥️

hellenbackagen · 13/10/2019 21:07

I echo that sentiment that dd is not nothing. I did extensive research. My decision was not made lightly at all. The statistics are quite worrying - premature birth to early on set dementia. Breathing difficulties. Sight problems. Autism. (I already have an autistic son ) there are many many complications associated with DS .

IceBearRocks · 13/10/2019 21:09

We have a severely disabled child and he is awesome! Very challenging but rewarding too.
We spend lots of time in hospitals and clinics.
He loves life and we love him!
If I could take away his pain...I would BUT Icould never take away his disabilities. Who would he be? Not the kid we all love so much.
Having him in our lives has also made our children into very caring individuals too. Do not get me wrong...weve just spent 4 weeks in hospital and 2 of them vented in PICU....so life is very difficult ! When I look at him though..I just want to burst because hes so bloody awesome!

Congratulations on your amazing little family ( we had 3 under 3......I sometimes wonder how we managed...but we did!)

Ridusofyourstupidity · 13/10/2019 21:26

In my case, I didn’t have testing so I didn’t know until he was born. He has one major midline deformity which has required multiple corrective surgeries, and more to come, but is healthy and on target to continue mainstream education in secondary. He is verbal but mostly babble and only understandable to those close to him. His consultant took several years to become hopeful in his development, his original pessimism was brought about by years of working with children who are more severely affected and assuming my son would be similar. We’ve been lucky enough to prove him wrong, and he is now our biggest supporter in all we do.

Babynamechangerr · 13/10/2019 21:33

Congratulations OP on the birth of your beautiful, special twins.

Sunsetjoy · 13/10/2019 21:36

NC for this but

@hellenbackagen I did too Flowers

I already had 1 DC and that was my main factor in deciding what to do, the baby had two heart defects very noticeable on scan, although I don’t regret my decision as I wouldn’t now have my lovely DC 2, I do still remember baby, look at photos, do birthday cards etc.

It is difficult and painful but I’m confident I made the right decision for my family.

Sunsetjoy · 13/10/2019 21:37

@Trysomymumandproud

Lovely post and congrats on your twins

PurpleDaisies · 13/10/2019 21:52

Congratulations on your babies. I bet they’re beautiful.

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

Unfortunately, Trisomy 21 does not affect all children in the same way. Some serious challenges lie ahead for many. It isn’t “nothing”. Being worried and scared about the future is a totally natural reaction and I’m not sure it’s right to imply everything will be fine when that’s not automatically the case.

Ridusofyourstupidity · 13/10/2019 22:35

In defence of OP, there seems to be some focus on her wording. I think we’re all well aware of the developmental and physical complications of DS, and that these can vary from case to case. To write that this is ‘nothing’ seems blasé and seems like OP isn’t acknowledging the severity of this.

I understand though, when you find out something like this every bit of worry and fear takes over and overwhelms you. It is a massive relief to be lucky enough to find that it really isn’t as big a deal as you feared. I feel exactly the same way. I frequently get people telling me it must be so hard and being surprised when I tell them ‘no’. My son’s is a severe case developmentally, but he excels physically, a friend of his is exactly the opposite. He will likely never be independent, just like many others. It is tough, but compared to what I feared, it is no big deal. That’s how I took OP’s words, with an unspoken acknowledgment for those who find it tougher.

riotlady · 13/10/2019 22:44

You sound like you’re a lovely family, OP

FrankiesKnuckle · 13/10/2019 22:55

Lovely post outlining how proud you are of your boy....

Please tell your other 2 children how proud you are of them too.

This isn't meant to offend but as the sibling of someone who is severely disabled, I was often (and still am) very much overlooked. It hurt and continues to do so.

Venger · 13/10/2019 23:07

No wonder 90% of people choose to abort with such rubbish info.

I don't think its fair to speculate on the reasons why women may choose to end a pregnancy or state that it's down to "rubbish info" when 100% of women in such a situation - no matter how they choose to proceed - make the decision that is right for them and their individual circumstances.

june2007 · 14/10/2019 20:44

Actually going by what a lot of parents say, they do get rubbish info. Being offered abortions as soon as they get a confirmation of high risk, with out knowing the fulliimplications. And do you really think 100% of women make the right choice when 90% of ds babies are aborted? Anyone who is like minded join the don't screeen us out campaign. Lets not be like Iceland where 100% of ds babies are aborted. (And yes i am aware of how ds can effect people in the more seriouse cases as well.).

Venger · 14/10/2019 21:12

And do you really think 100% of women make the right choice when 90% of ds babies are aborted?

I think that 100% of women faced with such a difficult situation make the right decision for them, their family, and their individual situation. That's not for you to cast any sort of judgement upon and this is not the thread for a debate about it.

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