1/17 chance of ds how best to prepare as not going for amnio please any advice appreciated.

[chrimbospirit]

Hi I'm posting this for my sister who has been given a 1 in 17 risk of having a baby with downs. She and her husband would not terminate so have not opted for amnio but have decided to get as best prepared as possible incase they have a baby with special needs.
What happens when you have a downs baby? Obviously until the baby is born you don't know the severity of the condition and medically what treatment if any they will need but are you autimatically under a pediatrician? are you given a social worker? How involved is your HV? How do you find out about things for the baby? Also where do you stand work wise - can you become a full time carer are you entitled to any benefits etc?
Can ds babies breast feed? is there anything you need to know looking after an infant with ds? Sorry to be so ignorant but we have no experience of this and my sister and her husband feel they will cope best if they are prepared for every senario.
Also she has been given this risk due to high hcg levels her other levels tested (whatever they were were fine) can anyone explain elaborate on this they were councilled at the hospital today but where blinded by science and don't quite understand.
Thank you so much.

There was a very similar thread the other day. I'll try to find it as I can't help.

Here it is
Hope it helps till someone more useful comes along xx

Hi Chrimbo - My dd3 is now 8. I was given a 1 in 90 chance of a child with DS and like your sister decided against amnio, we wouldn't have terminated. When DD3 was born the paediatrician confirmed she very likely had it due to her physical features and low muscle tone. A blood sample was sent off to confirm 100% and it came back within a few days. She didn't have any other medical probs apart from a chest infection. She had a cardiac echo to rule out any heart condition. To be honest having a heart condition makes a huge difference to the early months as surgery might be necessary. Look for threads by eidsvold for more info on this. DD3 was slow to get going with breast feeding and was tube fed for first week. However she then got the knack and fed for 20 months. We don't have a social worker, but were referred for an assessment at local child development centre where we were put in touch with loads of professionals. We were also referred for Portage (home based play service for LO with SN - marvellous service). The first year or so is a huge learning curve and the DSA is useful. I'm happy to mail you or your sis off board so CAT if you like. All the best to you xxxxx My DD3 is a star, check out photos!

It sounds as though your sister's other DS markers in her test were within normal range. More usual is to see a high HCG with a low AFP in a pregnancy with Down's syndrome and this is used with maternal age and other markers (sorry not sure) to give the risk. If she is over 35 this will make the risk higher.

Will a detailed scan give her more information?

A good place to start would be to contact the DSA UK - they are brilliant with resources and information.

DSA UK

she and you might find this helpful

At 20 weeks a detailed anomaly scan would be able to pick up a possible heart defect as approx 2/3 of children with down syndrome are born with heart defects. My dd1 ( who is 6 1/2 with ds) has the most common. SHe underwent surgery at 8 weeks old and has not looked back. In fact her heart is operating as if it did not have the defect.

Babies with down syndrome do and can breastfeed. It can be difficult. You can purchase a booklet from here - australian breastfeeding association which has a fab booklet to help with that.

here

In fact I have given this to a number of new parents that I have supported over the past few years.

SOme babies are born with none of the additional health needs that some children with down syndrome have. Once dd1's heart was repaired through surgery she has gone on to be very healthy. Aside from tonsils and adenoids - she is doing really well.

Have to go as dd3 is distressed. will try and answer more questions later.

okay - I worked full time when dd1 was 1 - 2 for a year - prior to us emigrating to Australia. She attended a mainstream nursery and their care was brilliant.

She is now 6 and in full time mainstream education here in Australia.

The DSA website has so much information.

We were basically told that if dd1 was born without down syndrome it would have been very very rare. In fact we learnt when she was about 2 - based on her heart defect we had approx a 1 in 5 chance of her having ds. As we knew families who had members with down syndrome it was not anything we were afraid of BUT dh did contact dsa uk for information.

Hi, just thought I would add my story and if its rosy you want don't read. I was at risk of downs anyway (hubby's side)although was low risk, no further testing needed etc. Had my baby at 39 weeks to find a serious heart condition. To later be told he was down syndrome. Cut a long story short he is now nearly 8 has an irrepairable heart condition, lung problems, non epileptic fits, challenging behaviour, sight and hearing problems and sensory processing disorder. The list goes on. He is functioning around 18 months old, severe mobility problems. He is really hard work, our family life has revolved round his needs, he has social anxiety. My daughter would tell you how her life has suffered and the constant battle day brings. My HV didn't know much, we battled for years to get a social worker, who we have had for 2 years and i will tell you it has never made a difference except make matters worse at times. He is seen by numerous consultants medically and goes to special school. This has changed our lives totally, maybe for the better. Although I have lost friends and a certain lifestyle I wouldn't change him for the world. He is gorgeous and looks like butter wouldn't melt. If you like a challenge, he's great. He is a 2 adult job for some situations and requires 24/7 supervision. I suppose we are at the extreme end but it is true you don't know what you have until you are in it. Check out THE SUN newspaper, search for Down syndrome. Hope this is not off putting and if you want to ask anything else please do. Take care and good luck.