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.

I don’t have any personal advice as such, however just wanted to say it’s normal to be in shock, this isn’t something you ever expected and it may be overwhelming but you will cope. Make sure you and your husband support each other. Down syndrome isn’t something to fear, though it will create some challenges. Have you looked online for support groups of Facebook? Most children with Down syndrome mange to eat and drink orally so it’s very unlikely to be forever. Make sure you have a speech and language therapist and dietician involved that can support you.

I can’t begin to imagine how overwhelming this must feel. I can only speak from my experience teaching young people with Down’s who are truly the most wonderful humans. I know how much their parents have fought though to get them through schooling and medical appointments. But I also see how siblings love and care for their brothers and sisters (both ways!) and how, after the initially shock wears off, that the family adjusts and absorbs the new child into their home, just like any other.

Your life will be a bit different than you expected. There will be some scary moments, as you've already seen, but that can happened with any child.

Re the feeding tube- I've tube fed a baby and (shh don't tell) it's actually great! Really fast. I know I'm trivialising it, but honestly tube feeding a preemie was so much easier than coaxing her to take an ounce every hour!

It will take a bit of time to adjust, but you've got a gorgeous baby boy.

Thank you so much for your reply. We have lots of services involved already including speech and language. They will see him in two weeks to check his swallow again.

My husband and I are supportive of each other, but I suppose he is feeling so overwhelmed and sad, I can’t really do anything for him.

We have 6 appointments next week alone and I’m just not sure how we are going to do it all.

I would join a forum of other mums and dads online to feel connected and share thoughts

Oh that must be such a shock and so hard to see your beautiful baby struggling.

I don't have any useful experience to share but what I do know is that a disabled child will change your lives and together you will create a new normal.

When you feel ready, do consider counselling. I found it very useful, if only to be able to cry without someone trying to cheer me up (sometimes you just need to let the sorrow out).

My disabled child is so different to anyone I've ever me. I went from deep grief to feeling honoured that it was me who got to be his Mum.

Congratulations on your baby, sorry they're not so well at the moment.
Life will be different in some ways to how you imagined - find some groups for support and information.

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.

I second the post above which said people with Down syndrome are the most wonderful humans. I work in a special school and have a few children with Down syndrome in my class and in my experience are the most loving children who give the best hugs. You are in for a wonderful journey. I absolutely 100% get the initial shock though as you didn't get the baby you were expecting and are undoubtedly grieving for that baby along with the future you thought you would have. Go easy on yourself and take one day at a time.

Oh, you poor thing - it must be so frightening to see him going through so much, so early. And with the unexpected diagnosis on top of that. I don't know much about most of what you're posting, but my DD had a feeding tube when she was very tiny and I absolutely relate to what you say. It does make you feel very overwhelmed and responsible.

Please do give yourself permission to feel angry and upset and shocked - it's horrible when you have a baby and things are not as you hoped and expected, and people can sometimes make you feel as if being sad or angry about that shock is the wrong reaction, or somehow indicates you don't feel lucky to have your baby. But it is so so normal to feel as if you're grieving for the experience you thought you'd have, and the life you thought your newborn would have had. I am just saying this because, though I don't have comparable experience to you, I know so many women who've felt bad because they had these feelings, which are perfectly natural and normal.

I hope your lovely boy will soon leave all the surgeries and tubes behind. Best of luck to you all.

Sending huge supportive hugs your way as the shock of the diagnosis, with the addition of medical / surgical interventions and a prolonged hospital stay must be so hard to deal with on top of the usual postnatal recovery / parenting duties for your other children. I’m not going to minimise the trauma which must be significant, but from all of my professional experiences of families in this situation I can say with confidence that it does get easier, the shock subsides and joy will most certainly return to your life.

If you haven’t already, please check out the social media of Sarah Roberts. I believe her instagram is something like dontbesorry2 and she wrote a wonderful book called ‘For the love of Oscar’ detailing her experiences of receiving a postnatal diagnosis of DS for her first baby. She writes so honestly about her shock and grief, and documents the journey from grief to acceptance to love and joy. Her little boy Oscar is an absolute darling and it makes for an honest but very uplifting read.

Take each day at a time and allow yourself to feel all the feelings without guilt. You’ve got this, I promise.

This isn’t personal experience but I have a friend whose third DC was diagnosed with DS after birth. He’s now 10 and the apple of his family’s eye and the relationship he shares with his siblings is really special. My friend and her DH save money so that they can take the other two children on individual holidays every few years. I think that’s a very special idea to recognise them and the way all their lives have to adapt and accommodate a sibling with perhaps higher needs. Obviously this is dependent on family support and money, but it touches me as such a thoughtful thing to do.

I hope your son quickly finds his place in your family and with that your DH relaxes. It must be so hard on you both.

Congratulations on your new arrival.
Once you and your Ds get through this difficult time you wil realise you have been given an amazing little person who will teach you many beautiful things🤗

Understandable to feel apprehensive, there are some excellent charities that can support you, when you feel ready OP. My friend had a Baby boy with DS, she didn’t know he had DS before he was born, he is such a lovely baby and now is lovely, fun, cheeky boy. It will be ok. Congrats on your baby.

Congratulations on your lovely boy!

We had a postnatal diagnosis eight years ago, so I have huge sympathy for the shock and fear you’re feeling. Tube feeding feels so frightening at the time - we did it for almost six months, until my daughter got the hang of bottles and was strong enough to get all her nutrition orally. You absolutely will get the hang of doing it out and about and will become pretty blasé about it. It’s incredibly common for babies with DS to be tube fed initially, and most go on to eat and drink normally.

My top tip is to try to get out and about and meet other parents of children with disabilities, as this really does help take some of the fear out of it. And there are some great DS parenting groups on Facebook. The biggest UK-based one is called Future of Down’s, and there’s a wealth of support and expertise. There are also groups for parents of children born in the same year - there should be one called Designer Genes 2022 or similar.

And I promise that pretty soon, you won’t see the disability - just your beautiful boy, and you really won’t be able to imagine life without him. xxx

Have you made contact with the PADS group? I think they often have a group for those whose children have just been diagnosed x

So sorry about the shock, but congratulations on your little boy! I follow quite a few accounts on Instagram where the babies have DS and have the same issues your DS has. One of the is shouting Evie's worth. Little Evie is amazing (she has some very serious cardiac defects) and her parents are brilliant. They have sought a lot of comfort with the DS community online.

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 think the trampoline advice has changed, @Summerlovin20 .

Congratulations! My DD has Down Syndrome, we knew during pregnancy it was a possibility but we knew for definite at birth. It is so overwhelming at first, you are in shock, denial, going through a grieving period for the baby you thought you were having. It’s really tough and do what you need to get through.

My DD is 4. The first year was the hardest, lots of surgeries, appointments, it’s really tough. After that things do calm down and it becomes more manageable. Honestly, it got so much better for us once she got to 1. All her medical issues had been diagnosed and were being treated, she’s had all her surgeries and we had accepted her diagnosis. I promise it gets better.

Our DD is wonderful. Her twin brother and older brother adore her. She is funny, determined, stubborn, full of personality, everything I wanted in a daughter. Some things are hard work, getting her what she needs to access school, medical care etc are all hard and require a battle but we get there. She can’t communicate well with words but she gets her point across in other ways. She is honestly a joy to be around, everyone we know is smitten with her.

I would seek PADS out, they have a new parents groups and see if your local area has a support group, ours is amazing. Most other parents of kids with DS are only too willing to talk to you and offer support, we were so warmly welcomed. There are lots of parents on Instagram as well and many of them are really happy to talk via PM if you need it.

Sending you and you family much love and please feel free to PM if there is anything I can do xx

OP, the biggest virtual hug for you and all your family. It sounds so overwhelming, so life-altering. Your little DC has faced already so many challenges, and you have all had to adjust so quickly, not just to their diagnosis, care and operations, it must feel like you are just getting through each day. It is OK to feel like that. Please ask for the support you need, both from the hospital as well as your family and friends.

Paul Kalanithi wrote - I can't go on. I must go on - and that is how it sometimes felt and still feels for me, especially in those long, grief-laden days after diagnosis. Give yourself permission to feel all of those feelings the grief, the anger, the fear. They lessen in time. Until then, just take it slowly, day by day.

I hope that today his stoma bag stays well-sealed, that if you need to change it, you have confidence in yourself to do it, and stoma messes are always washable. Stinky, but it'll rinse. And when you look at his feeding tube, remember, you know what to do. You've practiced it, you've got this!

I hope you are able to have some time to enjoy some of these early newborn-days with your little son, looking at clear new-born eyes, listening to his little grunts, marveling at the softness of his skin. And I hope you can take some time for yourself, too.

All my very best, OP. My thoughts are with you all.

Congratulations! I don't know how you feel right now as I'm a younger sibling not a parent. I hope you don't mind me saying that my heart swelled with happiness for you and your family. I will leave you with the parents who have been in your shoes but sending love to all of you. There will be joy. The Downs Syndrome Association have been really helpful to us.

@SomethingNastyInTheBallPool
It hasn’t at my sons school, the kids with DS aren’t allowed to use the trampolines. I didn’t know until my son was around 6, he had one of those little bounce up and down ones, when he went for his annual health check I told his consultant it was one of his favourite things to do, she dramatically told me that he could be paralysed, she also told me that I shouldn’t let him have his tonsils out because he would DIE under anaesthetic, the surgeon soon put me straight.
She was sacked I believe after numerous parents complained.

Should also say to op that some health/education professionals aren’t always right!

To add to what PP have said - and just to tell you I have a DC with a genetic disability (a different one, but I think my post is relevant if you read on) - you will be told different things and they may well present the worst case scenario.
This isn't about bringing you down, but to let you know what might happen. For instance, I was told my DC might never stand or walk. They have. And have gone on to develop skills that defy their condition.
In my DC's case it is horse-riding. I have been terrified. Meanwhile, they went on to enjoy pursuing their hobby, even though I might have had to turn my back and stick my fingers in my ears, singing 'la, la, la' to myself in the meantime.

My message to you is to not be afraid of allowing your child to do something. I was told many parents wrap their child in cotton wool and are afraid to let their child try to do something in case they failed. The only way you find out what they can do is to let them try.

That's a lot of information for now, but meanwhile see if you have a local Portage service. They will have groups you can attend with your little boy. You may well meet other parents in a similar position to yourself. You will also be able to borrow toys to stimulate your baby and help him to develop his skills.

I wish you all the very best.

Congratulations on your new baby OP.
Have you come across the piece of writing ‘Welcome to Holland’ by Emily Perl Kingsley? It’s about her experience as the parent of a baby with Downs Syndrome.