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.

Great update. With my son his paed said to just treat him like any other child. I talked to him all the time (and he went to daycare when he was 10 months as I went back to work) and his speech is now super. He was slow to walk which was really frustrating. Helping him develop a good grip and hand strength is important.

I am glad to hear all is well!

I would say the first 12 months are not that different in milestones, it is as they progress the muscle tone will be noticeable. It does affect eating ( had to be bottle fed) and walking . Perhaps when weaning you can avoid anything chunky, my son never cared for chewing meat. It would make him choke.(it’s the lack of muscle tone, which is part & parcel of the disability, your heart is a muscle, etc that’s why you will have all the health appointments )
The early years expose them to everything! Back in the day they had “Portage” a play therapist used to visit. ( he was my 1st child) Not sure if that’s still happening? Your sons paediatrician will be your best friend! They make referrals so don’t be afraid to ask. But you have other children so that’s a plus that will bring him on naturally. So enjoy him just like any other baby.😊

The Downs-syndrome association . Org.ukThis is an invaluable service too.

Slightly different slant we adopted our 3 with Down Syndrome, they are now adults and can honestly say life has been OK. Eldest (son) is not as academic as his sisters but is so kind and gentle. The girls went to mainstream school and got 2 GSCE’s each not A* but a pass. Yes there are health problems but you get on with it. I wish you all the best life will be different but still very enjoyable!

I would second Portage, if it's available to you. I think we had monthly visits when dd was small and then weekly when she was older. The Down's Syndrome Association are extremely helpful, also Down's Ed for activities (I think they do some early ones).

Not a parent of a child with downs here but my good friend has. She gave me (my dd was globally delayed later diagnosed with autism) good advice. Teach you child each skill in life they need them make them do it themselves even if it takes longer than you helping. Her dd is now living semi independently at a further education college and has actually testified to parliament!

Congrautulions I found out my baby girl had ds ar birth too and weeks later found out she had an underaticrive thyroid

the first 3 months of her life were manic with appointments left right and centre but now it’s really slows down, she’s almost 9 months old and is doing amazing .. sits up alone; almost crawling, babbling words and feeds really well both milk and purée

I don’t want to say too much as this thread isn’t new but if you’re still active I’d love to tell you more

@Claudb98 What a gorgeous little poppet! Those squidgy arms!

Gorgeous Claudb98 😍

How's your DS doing @Lomy22?

It doesn't work that way my son doesn't have Down syndrome but he does have severe autism and learning disabilities and an underlying rare chromosome disorder, we have had the learning disabilities team involved several time ,s but usually for specific issues, last time to help us getting him toilet trained and sleeping issues they don't stay involved once issues are resolved the child gets discharged, untill there are other issues, my son is at a special school btw and there are children with Down syndrome there but lots of other children with learning disabilities.

My baby girl was diagnosed with Down syndrome at birth she’s almost 1 now and I promise u it gets easier
she is such a blessing

we were the same we you so many appointments the first few weeks but now we have about 1 appointment every 5 weeks