Down Syndrome diagnosis after birth

[Lomy22]

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.

Hello!! I was in the same boat 12 years ago. Huge shock. Dark times. DS graduated from primary yesterday with fulsome praise from his teachers. He's a super boy we love him so much. Yes there's some challenges but we manage.

There's a group future of downs on Facebook - great for these early stages. You need to request to join it.

Feel free to message me.

It will be ok. xx

And hello to all the other DS parents here!

Hi, we've been where you are. Post birth diagnosis with 4 year old and 2 year old siblings. That first year was tough, lots of medical appointments, surgery etc. I found the hardest part was dealing with other people's reactions, but you do learn to grow a thicker skin.
DS is now 10 years old and an absolute delight. Our lives are better with him in it. Adored by his siblings (also has a younger one too). He completed mainstream infants and is now at an amazing special school, that has high aspirations for him. He swims and plays tennis. (He does trampoline, but has the ok from the physio)
I went back to work when he was 8 months old and DS went to a local nursery, who were pretty good with him. Working is pretty unusual amongst my friends who have children with DS, so definitely look into DLA and carers allowance.
The best thing we found was connecting with other families who have children with DS. Those with older children often have good advice about local services.
We don't know what our son's future will be like, we tend to just plan ahead for the next stage as anything beyond that is too far.
Wishing your family all the best.

@glowbabe utter tosh! And a comment that I’ve heard more times than I can remember, it’s utter patronising tosh.

I know from personal experience. Thank you .

Congratulations on your lovely new baby.
But some big big hugs for the shock.

My 3yo currently has an NG tube (for the past 6m). When we first got out of hospital with her it seemed like a BIG DEAL but a few months on, and it's genuinely fine. We got her a feeding backpack so she runs around with it on now. She's literally been on (gentle) roller coasters whilst being on a feed, and had a bolus feed whilst sat on the edge of a bouncy castle 😂. I've you get there hang of it, it won't keep you in! I imagine it could also be pretty convenient with babies. I'm looking forward to getting rid of the tube, but I love that I can give medicine without it being a battle, if I want her to have extra water, I don't have to nag her.

I don't know how it works with babies though - we mostly use a pump with the occasional bolus. If you use a pump, get a specialist backpack - even though your baby is too young to wear it, they can be put over the handlebars of a buggy, and keeps the bits easily movable. If its bolus feeding, it's not necessary, but I'd still take a little bag with syringes, testing strips in etc, to keep things in one piece.

As someone who was catapulted into a more medical environment about 6m ago, it really can feel a shock. Take all the support you can from family and friends. I assume you have a children's community nurse - you should have one because of the feeding tube at the very least. Ours is amazing, and she helps coordinate everything.

Best of luck

I believe @Summerlovin20 is correct about trampolines. I do rebound therapy with some SEN children at work and we are absolutely not allowed to let any children with DS on the trampolines.

That must be a real shock OP. Sending 💐
it will take time to adjust so don’t put pressure on yourself to be all ‘positive’ at the moment
congratulations on your little boy 💜

Congratulations OP on your beautiful new baby!

I know exactly how you must be feeling as like many on this thread I too had a post natal diagnosis of DS with my first daughter.

Would absolutely encourage you to look up Sarah Roberts of Don’t be sorry! She’s on social media and has written two books to date on life with her son Oscar who also happens to have DS. Or if you’re in London feel free to PM me for a chat.

xxxx

And @Summerlovin20 s post is spot on!

Congratulations on your new beautiful bundle of joy. I can understand the shock you're feeling, and them feelings are completely valid. I have no personal experience but I am almost certain once the shock has subsided and it has began to sunk in, you won't feel as overwhelmed by it all. There's help and support out there for you, and I wish you and your little family all the best 🎍

Hello lovely. Congratulations on your new little boy! 💙

I’ve never had a baby with Downs but I have had a baby who was born pretty poorly and needed round the clock multiple medications for the first couple of years. It felt like we had pretty much daily hospital appointments for the first couple of months, but it does settle down, and you also adjust.

Be really kind to yourselves; take each day as it’s own thing, try not to look ahead and make life as easy on yourselves as you possibly can right now. Nothing wrong with ready meals and lots of cbeebies for a few months, and call in every favour you can. If someone offers help, take it.

Just “live a little life” for a few months, don’t plan any big trips (or even small ones!) or take anything additional on, and by the time those few months have passed I promise you’ll feel more able to cope x

Gosh you are allowed to feel overwhelmed. Please don’t add pressure by trying to “cope”, just take each half day as it comes and keep putting one foot in front of the other.

I don’t know that you can fast forward this painful process of dealing with the shock and grief and guilt for grief and overwhelming love and really just so many powerful emotions as well as the deluge of information and the physical recovery from birth. But connecting with one or two other parents of Downs Syndrome may be very comforting.

My dd has DS and is now 12, we also found out post-natally. I remember exactly that feeling of bereavement for the child you were expecting to have.

Some good advice on this thread, the Down's Syndrome Association and Future of Down's are both very helpful. We joined quite a few baby groups and activities, which meant getting out and about. Baby signing, was particularly helpful as was Portage who support young children with SEN.

find your closest Deaf community and DS community. Real life support from others on the journey can make all the difference.
BSL British Sign Language has so many benefits both for Deafness and DS.
If you want to PM me your location I can signpost you to local services and support.

Take it a hour at the time and don't worry too far ahead. You have been through trauma of your newborn needing surgery and the knowledge of more to come is daunting. There will be good days and bad days it is ok to be sad for not having the newborn start you were expecting. its natural to be concerned about the unknown.

Ask for support from friends and family - what can they do to help? Hold the bay while you grab a shower, spend time with the other children. Bring you food/snacks, Take the older children for a walk. Drive you to an appt. Be available for a call when you need to let off steam. Clean your bathroom, kitchen, mow the lawn etc etc.

There are a few instagram accounts that may be helpful to you, one is libertyandellis, Downwiththewelbourns and the_mantons.

Hello
I hope you are getting through all your appointments. It is true you were not “Expecting “ a baby with a disability, instead you feel bereaved because you may feel nature has cheated you. But you are not alone, sometimes it can feel like a grieving process. But nothing in life stays the same, your baby needs your love and care, in time you will recharge and find support groups, life does go on although you may not feel like that at the moment as it is overwhelming. Most importantly be honest with your feelings with each other, support each other. You will get through it and enjoy your baby, he’ll have slower milestones, but hey he’ll get there, Treat him no different to your other children. He’ll come on leaps and bounds.
My son is 33 now, likes the girls, has his own flat( supported living).
Dont forget to get benefits advice too CAB, to see what he’s entitled to, (PIPS, carers allowance) money worries can play heavily on you juggling all the health appointments too.
I wish you well.

Thank you all so much for taking the time to reply.

Its been a busy month. Lots of appointments that all have went really well. He passed his hearing test, with perfect hearing in both ears. He was born inside the sac so all the fluid went into his little ears.

His heart is perfect which we are so grateful and thankful for. He is smiling, cooing and has much better head control than my other son did at this age! He doesn’t seem to be floppy at all, and his muscle tone seems to be great.

We feel very positive about his future, and we love him so much. We have been in contact with a few families with DS children and they have taken all the fear we had away.

we have such amazing family and friends support, it makes everything a lot easier. My other children absolutely love him, he is the most adorable baby I have ever seen.

To the parents of DS children who replied, would you have any advice on how to bring him on and help him with his milestones in the first year please? We’re doing lots of tummy time at the minute.

Also if anyone with DS children had feeding and swallow issues do these resolve as your baby gets older and the muscle tone gets better?

Thank you all so much again x

Wonderful update! He sounds like a trooper, and great news about his heart 💜

Congratulations on the birth of your beautiful baby boy.
I think once you get these medical complications sorted your life will be so much better, I know people with down syndrome and one family have 4 children 2 have down syndrome, my god they are sure living brilliant lives because the parents gave them the tools of how to live very very independently. They are teens now but when they were young the mum would stop at the school gate in the car (a country school)just like every other parent would and the kids went in themselves, they had some supports at the school and thats extremely common now with lots if different diagnosis in children so you certainly won't be the only parent with a child that needs support.I can imagine you must be so upset and you are because you are unsure of what life will be like but I suppose this is your boy and you are going to absolutely adore him,I feel you got a terrible shock and that will take months to recover from but you will improve a bit every day and you will laugh again and your husband will to but he just needs time to come to terms with this.Regarding your son,well he's going to have a very beautiful and fulfilling life because you as a family are going to be part of that.I think it's really good you posted here because it tell me you are already coping well and you are reaching out to people and believe me a lot of hands will be waiting for you👐

I used to work with children and young people with dudabiries, including many with Downs Syndrome. Separately, I have worked with children and young people without disabilities in mainstream settings.

Undoubtedly life held challenges for the kids & their families with DS. This was also true for many 'mainstream' families, albeit with some differences in the specifics.

The kids with DS tended to enjoy life and cheerful in the face of medical issues. They were genuinely lovely people, with resilience that was remarkable to me, and there was a trend towards the early years medical issues improving over time. I remember many happy faces and lots of belly laughs. I hope this is reassuring.

Best update ever! He sounds gorgeous! Good luck with the feeding tube etc x

What a brilliant update! Thank you so much for sharing

In terms of milestones, I wouldn’t worry. Just do what you would do with any other baby. Tummy time, playing, talking. Find out about Portage and when that starts in your area as they are really helpful for development. I would start some kind of signing as well as soon as possible, find out what your local authority use. Some areas use Makaton, some use BSL and start to learn some. Other than that, enjoy your baby!

I have a local friend who had such a diagnosis for her daughter, she gets a lot of support from FB groups etc.
Her DC is in mainstream school with a 1:1 and is a model!