Congratulations on the forthcoming arrival of your baby boy
I have a little boy called Logan with Down Syndrome who was diagnosed after he was born. He is now 12 months old and is the most lovable, cute baby you could ever wish to meet. From the day of his diagnosis, my husband and I set about reading everything we could about the condition and linked up with a couple of local Down Syndrome groups who have given us a lot of support. Logan has regular physio and is awaiting a speech and language assessment. He is also on the list for Early Years learning, a pre-school teaching service. We also have activities with one of the DS groups, including a specialist early intervention programme and a DS playgroup. They also have regular coffee mornings for parents and little ones to meet up and chat.
I was devastated after Logan's diagnosis and so was his Dad (he was 1 in 560 so we were very surprised). We soon picked ourselves up and were determined that we would give him the very best support we could offer. I know that being told your baby is different is an awful shock and can be upsetting and overwhelming with a mix of emotions all at the same time.
Having a baby with DS is also different from a practical point of view. At first, you don't know anything about your child's future, which can be a big worry. The first year seems to be a never-ending round of medical appointments, hearing tests, sight tests, cardio tests, assessments, paediatrician appointments etc. but I've been told that this isn't as intense after a while and at least then you will know exactly how your child is physically. From a medical point of view, my son has a very small hole in his heart that is expected to heal on its own, some sight problems and inconclusive hearing levels. From a development point of view, Logan is doing so much better than we could have ever imagined. At 12 months old, he is sitting, commando crawling, double-babbling and just starting to support his own weight on his feet. That's the thing though, every child is an indivudual and they all develop at their own pace.
I've had a precautionary fetal echocardiogram done during my current pregnancy and they found nothing wrong (I'm currently 30 weeks pregnant with Logan's baby sister who has a 1 in 750 risk and I refused invasive testing). To be honest, it's not really that different from a regular scan and the hospital staff were lovely. They found nothing wrong at all, but I also found out that the heart problem Logan has (atrial septal defect or ASD) wouldn't have been picked up by a fetal echocadiogram as it's the sort where a hole normally present before birth doesn't quite close afterwards.
Could I make a couple of recommendations to you if that's OK?
Firstly, if you haven't seen it, the Down's Syndrome Association have some really good literature:
https://www.downs-syndrome.org.uk/i...Publications/general/continuing_pregnancy.pdf
And if you look at the New Parent information on this page, there is a lot more if you can face reading it:
https://www.downs-syndrome.org.uk/resources/publications/general.html
Secondly, it's well worth contacting a Down Syndrome group run by parents in your local area. Most of them have coffee mornings where you can go along and meet people who have been in the same situation and also meet the children to give you more idea of what to expect. I'm not sure where in Scotland you live, but if you Google Down Syndrome and your nearest town/city, you are bound to find at least one group that you could go along and chat to.
I wish you all the very best with your upcoming heart scan and hope that everything turns out well for you. There are a lot of people in this forum with special needs children and we all try our best to provide encouragement, advice and support for other parents with special needs children.
Huge hugs to you
Let us know how the scan goes...I will be thinking of you. I am sorry to hear of all you are going through.
