Discovering your child has Down's Syndrome

[Twiglet73]

Hello, all.

My little nephew was born a couple of days ago and his parents have just been told that there is a good chance he has Down's. They are obviously completely floored and awaiting the final results of the confirmation tests.

Whatever happens, this will be a time when friends and family close in to offer help and assistance both to them and their gorgeous new nipper.

I just wondered if anyone was able to share their own experiences of going through this, some of the processes they went through and - crucially - what help or assistance you received that helped you (or help that you wished you'd had)?

We're all on a bit of a steep learning curve, so any pointers on how I can be of greatest help would be really welcome. There's still a lovely little baby to be welcomed, but I'm just not sure what the bigger picture is and what the parents may be going through or facing in the next few days and weeks.

Many thanks in anticipation.

Hi Twiglet and congrats on being auntie!

I found out my DS had down syndrome after birth, after they found his heart condition. I felt like I didn't want to see anyone and worried about telling people. My life became filled with major worry and hospital appointments.

I think with me having one in special care and one in nursery and DH at work, I could of done with more practical and emotional support. However that was nearly 12 year ago and hopefully how you are told and the support given has come on immensely.

I would also say remember he is just a baby, treat him no different. Don't get hung up on all the positive personal stories you hear, you don't know how the road you will travel along with your own will wind, until your on it. Remamber every child/baby is different and the syndrome is wide and sometimes other issues crop up.

HTH, if you want to ask anything else, feel free. x

Hi Twiglet73 My son is five and was born with DS and was also diagnosed at birth. The early days for me were really hard emotinally, I was so happy to have my little boy but was hugely overwhelmed by feelings of grief following the diagnosis.

For me just being able to talk was HUGE! I'm pretty sure I was an incoherant mess at times but having someone to give me hug and listen to my ramblings really helped. It was also nice just to talk about random baby stuff as I didn't want to talk about Down's Syndrome all the time. Also being congratulated on my baby....had a few 'oh i'm so sorry' and had many people tell me about god having special children for special parents......really not what I wanted to hear!

We saw quite a few Dr's during our time in hospital, but once at home it was just the usual midwife visits (ds had no health problems at birth) and we were referred to an early years support worker who specialised in children with learning disabilities.

I think it's just hard to picture what your future is going to be like, all those things you had planned before your baby was born. For me once home from the hospital our life was pretty ordinary (baby groups, meeting friends for coffee) Life goes on......just really hard to see this when in a fog of emotions.

For me the biggest support was contacting my local DS group, they had a new parent contact who came to my house when ds was a few weeks old. Being able to talk to other parents who knew how I was feeling was invaluable and they gave great personal advice and support.

Bumping this up for you a little, firstly congratulations on your new nephew! I don't have experience of DS but imagine there will now be a period of tests/hospital visits and this is somewhere where practical help will be most appreciated - stick a dish in the fridge, pitch in with driving to appointments, help entertain other DCs if there are any.

Take lots of photos. Make sure this happens - don't let the shock of the dx overwhelm the joy of the moment, when the dust settles I imagine it would be really hard to look back and realise there's hardly any pics of the first few days. I know that sounds trite but it's the kind of thing that would bother me IYSWIM?

Oh and what Sonara said about 'special parents' x 100. Any one mentioning any caring carrot shit must be taken down.

And just be around to listen and pitch in and do any of the other stuff you'd do with a new baby. Oh, and suggest they keep a notebook. There will be a lot of info flying around and it's really hard to keep track in the early days.

Wow. Thanks so much for the honest responses.

Have tried to keep it as 'standard' as possible, i.e. focusing on him as a baby rather than any other stuff dominating.

Comments here very much appreciated.

Thank you.

A

Hi Twiglet73 - congratulations on becoming an auntie!

I have a DD with Down's, again not diagnosed until birth. As Devientenigma & Sonora have mentioned, the first few weeks really are the worse. The shift from expecting a healthy DC, to having a child with complex SN & potentially serious health problems in the space of a few minutes is a lot to take in initially, it seemed as if every time we saw a DR they added a new problem! It didn't help that every professional seemed to use the phrase "compared to a normal baby", just in case you were in any doubt that your DC wasn't 'normal'....

Like the others said, the best support you can offer is to treat your nephew (and his parents) as you would any other new born. They will be having enough of a reality check everyday with the hospital, so helping them focus on other more positive things will really help.

It may sound silly, but don't forget to congratulate them, it's amazing how many people don't, I lost count of the amount of people whose first words on seeing DD was "I'm so sorry", which wasn't helpful. I even had one nurse tell me I could sue the hospital for failing to diagnose pre-birth & not giving us an option?!? But you just need to ignore those type of comments.

I joined all the local mother & baby groups, it was a little tough at first (possibly more of my own worry about how people would react), but once people were aware DD had DS and what that meant, they've been great. It also means that people now wave to DD when they see us in the village, rather than stare.

Congratulations! My son 3 years has Downs Syndrome. He absolutely is the light of my life and brings joy to his family and friends on a daily basis. Strangers want to make friends with him, but all of this is in the future for your little nephew! Congratulate the parents, make all the usual fuss over the newborn, take flowers and gifts and celebrate! He is firstly a gorgeous baby, I still feel a little sad that some people were shocked and didn't "do" flowers and gifts. I felt very hurt on behalf of my son, I wanted him to get the lovely new baby treatment that his sisters had previously enjoyed!

Be sensitive but not afraid to discuss anything that the parents want to raise. Let them talk if they want, or support if they seem shocked. Find information online from The Downs Syndrome Association, and two websites written by parents, Noah's Dad and Downs Side Up. Both sites are knowledgable and reliable, realistic and not at all scary. You will discover people having perfectly ordinary family lives!

Is your sister the mother? Or your brother the father? Either way, be alert for when they really need emotional support. This varies so much, lots of watchful waiting is your role! It can be months for the parents to process their feelings, and these will change in time as well.

For me the baby stage was literally no problem, I was so exited to have my son but I did "crash and burn" with sheer exhaustion as he approached toddlerhood, suddenly I minded very much that his progress was slow through his milestones. With friendship and support I got myself better but most parents will admit to difficult feelings at some point, all to be expected.

Best of luck to you all, you do not know it yet but you really are blessed, and I say that as a non religious person!

Any specific issues or questions, please post again.

Best wishes xx

www.NoahsDad.com

www.downssideup.com

Exactly the positive type of story I was talking about. Take your time, it may not be like this.

Some of us write positively because it has honestly turned out to be a positive experience. We want to help, to encourage to say this won't be the worst thing that happens to your family. I did refer to difficult times and difficult emotions and my links are places where people honestly discuss their experiences. Most families I know do become very positive in their outlook, much more helpful than falling into self pity, have a look at all the posts where parents worry about NT children!! DS isn't the only worry parents have. Many NT children provide heartache for their parents. We are not an exclusive club! I suppose most if us just try and make the best of what we have and in doing so, realise our children are fabulous and bring gifts as well as challenges.

There is no need to preach to me, I have 6 kids, 4 have special/additional/disabilities.

Hello, I know this is an old thread, but am in a similar position to Twiglet. My SIL has just had the most beautiful baby girl who appears to have Downs Syndrome - she has some heart problems which have led to the diagnosis and will need to be fixed.

We've sent new baby congratulations etc but it is slightly complicated as SIL emigrated to Australia 4 years ago so there is a massive time difference to consider and there is absolutely no way we can get out there for at least another 12-18 months.

Is there anything else we can do to support and for them to know that we love them all? We've been doing regular emails/parcels/letters etc so will keep that up. Is there anything else?

At this point in time, the most important thing you can do is be an ear and a shoulder. The time difference is difficult, but allowing the new mum and dad to vent, without either telling them awful things like "well, I am sure you will be good parents while she is alive" or things that can seem like so much fluff "she'll be just fine, you don't need to worry". Yes, I have actually heard those both. Email is a wonderful thing - I live in Canada, one of the best mum connections I have ever made is in Australia, and we correspond via email almost daily - knowing fully that the next response from either of us will not be for hours, most times.

The baby's diagnosis has certainly come as a shock to them, and I am certain they are reeling, but at the end of the day, she is a baby before she is a baby with Down Syndrome. Frankly, right now will be a bit of a whirlwind dealing with the cardiac issues, but once they have those managed for now, then the enormity of the future may crash down on them. It is then that the real test of your support will be - when your SIL is scared beyond belief, and you don;t know what to say for fear of making it worse. Aside from the obvious (something very critical or dismissive) you can't say the wrong thing, so do try not to let the whole situation scare you off.

And remember, life exists beyond the baby - especially if they have other children. Don't let siblings be forgotten in the mix. They are as scared (and in many cases moreso) than the parents, because if they are old enough to understand, they still might not be being told everything, and are putting together in their own mind the picture as they see it.

Thinking of you - and your new niece. Your SIL has a good friend in you.

Thank you so much for your reply. I think it is s huge shock to them and pils as well so mil is getting anxious.

We'll keep in contact and try to help however we can.

Skaen you could contact via email the Down syndrome association in their state and they will have new parent support people who can come and speak with them. I have a young lady with Down syndrome. We live in Australia and for some time I was a new parent supporter in brisbane. My role was to visit family and chat and answer questions and provide support for them. Give them information for them to read as and when they felt ready. You could contact the dsa UK for info for yourself to read up on as well. If she would like support for breast feeding then she can contaCt the Australian breast feeding Association. They do have information regarding feeding a baby with Down syndrome.

For me the biggest best thing was people welcoming our daughter as you would any new born.... Rather than letting the Down syndrome dominate. My daughter and cardiac issues that needed to be resolved as well but those friends who celebrated rue daugher's birth with us - she was our first child.

You could also contact the downs heart group in the uk for info as well. You may be well to get some info for her. I found them so helpful (my daughter was born in the uk.)

Lovely to see you here eids. I was going to come and find you to show you this thread for the Oz angle.

Skaen - can you coo over the baby on Skype? That sort of thing. It's difficult being so far away but I would just do a lot of asking how she's getting on. Some people may avoid the subject out of embarrassment & when my son was dxed (with something other than DS) that was the worst thing. I wanted to be 'allowed ' to talk about it, not silence the room if the dx was mentioned.

Thank you for the messages. It is really good to get such helpful advice. We haven't been able to speak over Skype yet because DN is still in hospital and DSil is there most of the time - time differences and dodgy broadband haven't helped.

We've emailed and admired the really gorgeous pictures. We've always tended to email but a lot of it is mundane stuff about what all the DCs are up to - I feel a bit guilty for writing about that now.

Thanks for the recommendations for the Ds society. I will have a look. I just so want to go over and give them all a huge hug.

downs heart group uk

Skaen what state do they live in?

Waken do not feel guilty for writing about your children. My dn was born two months before my daughter and whilst at times it was poignant to see some of the differences I would not want to be treated differently iykwim. Suddenly stopping what you have always done makes it even harder and makes it seem like everything has changed. My daughter was born with a complete atrial septal defect which was repaired at 8 weeks old with two open heart surgeries. Health wise that heart has given her no more worries. Whilst it was cardiac surgery the avsd is the most common heart defect in children with Down syndrome and repaired by patching the holes in he heart.

Thanks. They're in Victoria. We're waiting to find out exactly what the situation is - its DH's sister and MIL doesn't tend to pass on information unless we really need to know.