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Down Syndrome diagnosis after birth

86 replies

Lomy22 · 24/06/2022 19:19

Hi,

Im hoping someone can help me here. My 3 week old little boy has Down syndrome. We found out after he was born, we are still in shock.

We have only just got out of hospital as he has a bowel problem. He underwent surgery at 2 days old to have a colostomy bag fitted. He will need another 2 surgery’s and then have this reversed.

He came home with a feeding tube, which we find so overwhelmed by. I’m so worried it will be here forever. He is having problems with his swallow. So for now they said it’s not safe.

He failed his hearing test twice and now needs it redone next week.

It’s all so much information and so overwhelming. I’m so heartbroken our baby is going through so much.

my husband is not coping well, we have two other children who are 5 and 2. So it’s all
so much for us. I’m so scared our life’s will never be normal again.

OP posts:
RandomMess · 24/06/2022 20:57

Happened to a friend (pregnant at the same time). Their 3rd too, lots of health issues when a baby and scary times but she's now an adult and loves living in an adult supported home and has a great relationship with her siblings and parents.

Summerlovin20 · 24/06/2022 21:20

@Onlinetherapist

I’m familiar with that poem, there’s many in the DS community I know who aren’t keen.

HettyHoo · 24/06/2022 21:24

I am going to be honest and straight to the point.
Your life is never going to be how it was ever again. Your new child may need care all their life. It's a risk you take having kids at all.
Our twins have special needs and will need our care all our lives and its something we've had to get our heads around and you will too. It's a shock but he's your son so you'll just get on it it

Summerlovin20 · 24/06/2022 21:35

@HettyHoo thats a bit harsh for a woman who has just given birth and is still coming to terms with it all.
Life can be fairly normal with planning, adjustments and support. Life doesn’t have to revolve around the child.
And it’s not true that the rest of your life will be taken up caring, my son will be going into residential care around the time he leaves college at 24 which is when many adult kids move out. I love my son with all my heart but will admit once he’s settled in and happy I’m off for the holiday of a lifetime!

MrsWayne · 24/06/2022 21:38

I’m sorry I have nothing to add that is helpful. It looks like there is some incredible support/advice in the thread. Sending you best wishes to you and your family, especially to your little boy. 💐

Higgeldypiggeldy35 · 24/06/2022 21:46

Im sorry that you're going through such a stressful time. My auntie had DS and she was wonderful. It can seem like such a daunting prospect im sure. But i wanted to reassure you. People with DS can have wonderful, meaningful and beautiful lives. I hooe you're ok x

WhatNowwwww · 24/06/2022 21:53

Summerlovin20 · 24/06/2022 20:24

Congratulations!
My child was suspected DS at birth then confirmed when bloods came back. Fortunately he was born without any health issues, he’s now a young adult.

A few emotions you may feel are anger, guilt, grief and an overwhelming protective instinct for your child, way more than you feel for your other kids.

Ignore the idiots who tell you your child is a gift from god, you must be a special person to have such a special child, you’re blessed! It’s bollocks. As is the old trope that all people with DS are happy and lovely and cuddly, they aren’t, they have exactly the same emotions as everyone else, my child is coming out the other side of being a grumpy, stubborn teenager.

It won’t be all unicorns and rainbows, in my experience everyone finds a cute DS baby adorable, unfortunately peoples attitudes change as they grow and become less cute. You will experience bigotry and horrible attitudes.

Services for babies with DS are undeniably excellent, this also changes as they get older, be prepared to fight for what your child deserves.

When the time comes please consider a SEN school.

Try and make time for your other children one on one, having a disabled sibling is tough as my adult child can confirm.

Involve as many family members and friends as possible, you will appreciate the support in the future. Older relatives may have a somewhat negative attitude. Ignore.

The first time I cried was when the midwife took the development pages out of my child’s red book and replaced them with Down Syndrome development pages.

Be prepared for hospital stays, even now a fully packed hold-all is ready to go under my bed.

You will love them with a ferocity you didn’t know existed.

Apply for DLA and carers, it sounds as if you might qualify as your baby has extra health needs.

Your child must never use a trampoline.

Some idiot will tell you at some point that your child will be highly sexed, it’s rubbish, people with DS have fewer inhibitions so need boundaries enforced from a young age.

I wish someone had told me all of the above instead of making out it was all ok, life would be day after day of fun and cuddles.

My exH couldn’t cope with having a child with DS and left when he was 2, he’s seen him
a handful of times since, if your DH isn’t coping well after the initial shock has worn off think about some talking therapy.

I remember how you are feeling right now, I felt lost and scared and my heart goes out to you, raising my son has been tough but I wouldn’t change it for the world.

If you need anything or want advice PM me.

I have family members with DS and I would agree with every word of this post. Especially about involving family and friends for support as much as you can.

Barleysugar86 · 24/06/2022 21:54

Sending hugs OP.

It's not the same at all really but my second child was born with hip dysplasia. It was a shock and a whir of medical appointments and I remember crying a lot as I was worried for her. She was fitted with an obvious medical harness she had to wear 24/7 and I felt awkward taking her out of the house because she looked so obviously medically being treated and it felt so very out there and on show. Such a change from having the cute baby strangers want to come love on.

I'm not sure how much its that which makes you feel overwhelmed at taking him out or the practicalities of the tube but I found it helped to go out with others the first. I found it easiest to explain to any other mums at groups early what the harness was so I didn't feel like it was hanging over the conversation and other mums were really supportive and it felt good to talk.

Hormones are so high with a newborn and everything feels that much worse whilst the shock subsides and when they seem so small and delicate. Anything medical when they are too young to understand is painful to do even though it's for the best.

It might help yourself and your husband to watch some videos of other children with the condition- I'm thinking of Sophia Sanchez off the top of my head as she seems so articulate but I'm sure there are many out there. For some children the condition seems to be fairly mild and it might be worth holding on to the fact that he might not be as different a child as you worry he will be.

Onlinetherapist · 24/06/2022 21:56

@Summerlovin20 I found it comforting at the moment in time it was sent to me. It has come in for some criticism though and isn’t for everyone.

WhatNowwwww · 24/06/2022 21:57

HettyHoo · 24/06/2022 21:24

I am going to be honest and straight to the point.
Your life is never going to be how it was ever again. Your new child may need care all their life. It's a risk you take having kids at all.
Our twins have special needs and will need our care all our lives and its something we've had to get our heads around and you will too. It's a shock but he's your son so you'll just get on it it

Both my family members moved out of their parents homes in their early 20’s. One of them lives totally alone with support in the day.
One of them had various health problems as a baby that involved multiple operations for years, but those health problems are now under control.

BatshitCrazyWoman · 24/06/2022 22:04

Summerlovin20 · 24/06/2022 21:20

@Onlinetherapist

I’m familiar with that poem, there’s many in the DS community I know who aren’t keen.

I have an adult DC with Downs. That bloody piece of writing really annoys me!

OP my DC had major heart surgery at 3 weeks old, I was young when he was born (he was my first baby) and didn't know, he was diagnosed at birth. It felt like one thing after another, then suddenly we were out of hospital and at home. There was definitely some adjustment, mentally. It really helped me to meet other parents, and I am still firm friends with them, after several decades.

Congratulations on your lovely little boy 💐

BatshitCrazyWoman · 24/06/2022 22:07

Summerlovin20 · 24/06/2022 21:35

@HettyHoo thats a bit harsh for a woman who has just given birth and is still coming to terms with it all.
Life can be fairly normal with planning, adjustments and support. Life doesn’t have to revolve around the child.
And it’s not true that the rest of your life will be taken up caring, my son will be going into residential care around the time he leaves college at 24 which is when many adult kids move out. I love my son with all my heart but will admit once he’s settled in and happy I’m off for the holiday of a lifetime!

Quite.

My son doesn't live with me!

TokenGinger · 24/06/2022 22:14

Follow chesters journey t21 (with an underscore between each word - I can't add it in as it just underlines the text) on Instagram. That's run by another mum who found out her son has DS after birth. She's been so open and honest about Chester's journeys and the ups and downs and she speaks about the community support she's found via Instagram x

Fleur405 · 24/06/2022 22:16

Hello. My son had a different genetic disorder but some similar issues (hirschsprungs which sounds like it may be what your little one has, developmental delay, a colostomy and a feeding tube) so I understand some of what you’re going through. its a lot to come to terms with but you will and it gets easier.

It’s ok to feel a kind of grief for the kind of life you thought you’d have and that your little one would have.

My main piece of advice is to just get out and about with the feeding tube - people are mostly understanding and although you might feel a bit self conscious at first there’s really no reason why you can’t/shouldn’t do normal things like go to cafes/the park etc.

I won’t lie - it can be very tough having a child with so many medical issues but your son will bring much joy and love to your life too and all his achievements will be extra special.

idiotmagnet · 24/06/2022 22:21

Summerlovin20 · 24/06/2022 20:24

Congratulations!
My child was suspected DS at birth then confirmed when bloods came back. Fortunately he was born without any health issues, he’s now a young adult.

A few emotions you may feel are anger, guilt, grief and an overwhelming protective instinct for your child, way more than you feel for your other kids.

Ignore the idiots who tell you your child is a gift from god, you must be a special person to have such a special child, you’re blessed! It’s bollocks. As is the old trope that all people with DS are happy and lovely and cuddly, they aren’t, they have exactly the same emotions as everyone else, my child is coming out the other side of being a grumpy, stubborn teenager.

It won’t be all unicorns and rainbows, in my experience everyone finds a cute DS baby adorable, unfortunately peoples attitudes change as they grow and become less cute. You will experience bigotry and horrible attitudes.

Services for babies with DS are undeniably excellent, this also changes as they get older, be prepared to fight for what your child deserves.

When the time comes please consider a SEN school.

Try and make time for your other children one on one, having a disabled sibling is tough as my adult child can confirm.

Involve as many family members and friends as possible, you will appreciate the support in the future. Older relatives may have a somewhat negative attitude. Ignore.

The first time I cried was when the midwife took the development pages out of my child’s red book and replaced them with Down Syndrome development pages.

Be prepared for hospital stays, even now a fully packed hold-all is ready to go under my bed.

You will love them with a ferocity you didn’t know existed.

Apply for DLA and carers, it sounds as if you might qualify as your baby has extra health needs.

Your child must never use a trampoline.

Some idiot will tell you at some point that your child will be highly sexed, it’s rubbish, people with DS have fewer inhibitions so need boundaries enforced from a young age.

I wish someone had told me all of the above instead of making out it was all ok, life would be day after day of fun and cuddles.

My exH couldn’t cope with having a child with DS and left when he was 2, he’s seen him
a handful of times since, if your DH isn’t coping well after the initial shock has worn off think about some talking therapy.

I remember how you are feeling right now, I felt lost and scared and my heart goes out to you, raising my son has been tough but I wouldn’t change it for the world.

If you need anything or want advice PM me.

What an excellent post.

Panda8383 · 24/06/2022 22:26

Congratulations on your baby boy, I bet he’s just gorgeous, also if you use Instagram there’s a page called shouting evies worth, Evie is a little girl who has ds and her mum is just telling their story, the page is great xx

cestlavielife · 24/06/2022 22:31

Congrats on your baby! Seek out local ds parent group
It will be different but ok
You might like to read "expecting adam"

SirVixofVixHall · 24/06/2022 22:48

Congratulations on your new little boy.
I know this must be a huge shock , it will take time to adjust. I knew a family with four children, one of whom had Downs. They played together and fought and loved each other as all siblings do. The little girl with Downs was as funny and lovable and engaging as the others. They were a close little bunch.
I hope that any medical challenges are minor and that your little boy doesn’t have any serious health issues. A child with Downs has challenges, but can have a happy and fulfilling life like anybody else.

PeanutButterFalcon · 24/06/2022 22:57

Congratulations on your little boy.

I work in the hospital. When you are ready seek out the support of your learning disability nurse or child’s disability nurse. They will work with children and adults.

They will support your son, you and the family and build a relationship with you all. Ensuring everything is in place to allow ease of access to services, help liaise with specialists, possibly see Drs the same day so you don’t have to keep returning (where possible), ensure you have support and a rest and help you access community support (plus so much more). If you need something ask them and they should be able to help or point you in the right direction.

Everything will be really overwhelming currently. If you don’t understand or need more practice tell the hospital staff they will not mind. Tube feeding feels really daunting to begin with, soon you’ll be doing it without thinking. It takes practice. We all make mistakes. This is a huge change to what you imagined however it doesn't have to be a limitation to life. You can still do everything you thought you could do as a family together.

all your emotions are valid and real.

catcurl · 24/06/2022 23:49

Congratulations on your little boy OP.

I don't have any personal experience with Downs Syndrome to share, but there's a fab Facebook, 'Ollie and Cameron' you might find helpful, lovely family including twin boys with Down's Syndrome.

SomethingNastyInTheBallPool · 25/06/2022 08:33

Ollie and Cameron are brilliant.

OP, my DD(8) is currently watching Peter Rabbit
on her iPad and eating toast and marmite which she helped make herself. She’s just asked me if I’m ok - I have a horrible cold and sound dreadful - and reassured me that I’ll be alright. It’s all so normal and cosy - something that I couldn’t have imagined 8 years ago when I was hit with a postnatal diagnosis, feeding problems, impending heart surgery, etc. You will get through this period and look back with a mixture of horrified amazement at what you all went through and nostalgia for your tiny baby!

PirateAha · 25/06/2022 09:03

@Lomy22 I haven't read all of the replies (the few I have read were beautifully supportive which is wonderful).

I have a child with DS. Mine was a pre-natal diagnosis and that was pretty tough, post-natal must be brutal. Trying to deal with your completely natural worries and fears whilst also caring for your tiny, somewhat sickly baby is very tough indeed - congratulations to you and your husband and please be kind to yourselves.

There is a wonderful Facebook group called Future of Downs which can help with practical advice, between us we have so much tube feeding experience we could write a library full of books. If you would like to DM me with where in the country you are I will help you find your local support group, these are excellent because of the local knowledge of services etc as well as the offer to hold baby whilst you drink a hot cuppa!!

I'd be happy to talk to you at any time - just message me. Best wishes to you and your family, you will get through this and one day, one day you will realise this is better than ok, it's amazing xxx

PirateAha · 25/06/2022 09:07

Lomy22 · 24/06/2022 19:37

Thank you all for your lovely encouraging words. This is so far from the life we were expecting it will take a lot of adjusting.

I agree with the tube feeding part, but I feel like I can’t leave the house at the minute. Maybe I’ll get used to feeding on the go in time.

I’m sure once we get through all the medical things to deal with, life will be more normal again.

Sorry just spotted this post and wanted to add that I also found tube feeding overwhelming at first (who wouldn't?) but after a couple of months I have a strong memory of taking my eldest (who was 3) to the theatre during school hols (kiddie theatre) and stopping to sit on the grass in Leicester Square amongst all the tourists to tube feed the baby like a pro whilst entertaining the 3 year old. I felt a bit like superwoman then 😳

x2boys · 25/06/2022 09:19

My advice would be to find people who have children with similar disabilities
My son doesn't have down syndrome, but he does have a chromosome deletion ,and has autism and learning disabilities, my main support has been parents facing similar challenges ,both online and in real life .

glowbabe · 25/06/2022 09:28

You don't believe it now but this child is a gift and a joy who will enrich your family

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