Friend just had downs baby (surprise) how do I help?

[pupuce]

Hello

Wondered if I could get some wise suggestions...
My good friend just had her 2nd baby 3 weeks ago... and she has downs syndrome. This was totally unexpected (she had the blood test done and it was a very low risk + she is 32)... anyway... I am not sure how she is finding it as she is very private, she has said things that made me think she is "OK" and then others that she isn't... (like baby won't even mummy or daddy until she is 4).

I want to be a good friend to her so I am not sure what is the best way. I am also a bit concerned as last time she had PND... She is not one to share her feelings easily and we live at quite a distance - actually she is in France so I can't just pop up...

Any advice?

BTW - she is bottle feeding her baby EBM as she won't latch on - and the extra milk she is donating to a milk bank.

I'm not the mother of a downs baby- my son has autism, but I think it is very important that you talk to her about the baby and about the fact she has downs. Some of my (ex) friends are unable to use the autism word - and tbh I can't be bothered speaking to them now. I expect a lot of her friends will be avoiding her because they're embarrassed so just being in touch will be helpful. Maybe you could do some research on the web for something positive about downs that you can send her. I think that can be helpful.

At the moment it will be a huge shock- and just reading something positive will help. There may be support groups on the net (does she have access?) -in fact there will be- I foound those incredibly helpful when I was coming to terms with my son being autistic. One of those people I met has become a best friend.

I suspect she will also find plenty of young Mum's. Although Mum's over 35 are at a higher risk, the majority of downs baby's are born to the under 35's (as under 35's have more babies in total). Just knowing that my help.

I wouldn't worry too much about trying to talk about what the baby will do at certain times- that comes with acceptance. I have no idea at what age Down's babies start to talk- would imagine there's wide variation- but I bet they could use sign language like makaton earlier anyway. Acceptance will come, and soon she will love her daghter as fiercely as she loves her eldest.

Best thing you can do though is keep in contact. And ask about the baby.

There was a lovely piece on John Peels radio 4 show a couple of weeks ago about a woman coming to terms with having a downs son - it was very postitive- maybe it's stored on the web somewhere?

Sorry to mums who may be upset for saying "down's baby" btw- you know I mean baby who happens to have downs.

There's a bit about the piece from home truths here . There's also a guide for new parents of downs syndrome babies, from the uk downs syndrome association - either in a print format or online.

Thanks JimJams

Yes I actually know a toddler who has downs at our playgroup and he does sign language...I told my friend this and she didn't know you could do that. I have suggested that she does get in touch with parents (support groups) - she said she will but I think she is taking 1 day at a time. She did say it's not like I can ask my friends about what you do when X, Y or Z as my daughter is different. She did say about loving her just as much.
It talked about her big brother being so gentle, I am sure he'd protect her... she thought that was nice.

We'll see - I do think I need to give her a bit of space...

I had a friend who had a baby suffering from Apert's Syndrome, she took it very badly and it was a big shock to everyone. I think she felt very isolated and would often ring me in tears because she felt so desperate. At one stage her son went to live with her parents because she just couldn't cope.

The way I dealt with it was to find out as much information about the syndrome as I could, I didn't want to be saying the wrong thing. After that I was just a friend. So many people back away when there is a child that is a little bit different, I saw them very regularly and after a while I didn't even notice that he was different. I used to go shopping in town with her and I think she appreciated the support as people did tend to stare.

I would say the best way to approach it is to be her friend and keep up regular contact. She will definitely appreciate it.

My sister had her first child aged 27 and he has Downs Syndrome, it was a complete surprise to her too. He is 14 now.

I think the first thing your friend must do is realise that it is ok to grieve for the child she thought she would have, to enable her to come to terms with the baby she has. She will have a lot of mixed emotions right now, and all of them are very valid.

The second thing is to realise that children with Downs Syndrome are as individual as any other child in the world. It's impossible to say that her daughter will do this at such and such an age, or may never achieve that. All children are better at doing one thing and not so good at another. All children have tantrums, need feeding , changing etc, and all children have their own personalities. Her daughter will be no exception.

Let her take her time to find out about her daughter and build their relationship at her own pace.

On a practical level maybe when you feel she is ready, you could give her information about the Downs Syndrome Association, or the French equivalent . You could contact them yourself to see if they can offer any advice for you as well.

Apart from that just be there for her. Hth.

Have you recommended mumsnet to her? If she doesn't find it easy to share her feelings, maybe she would find it easier on here?

Hi pupuce: my cousin had a 2nd baby who was Down's ... she did manage to breastfeed him in the end but it was a long stubborn drive to get him to latch on. Apparently br'feeding helps with speech in Down's babies, so it's a good thing to persevere with.

When we last visited my cousin's husband pointed to a picture on the wall and said, "Your mother took that picture. It's one of the best pictures we have of him because most people are afraid to get too close to him".

It makes me think that it would be immensely supportive of you if you could find a way to make a fuss of this baby in the same way you would any newborn; a baby is a baby, after all. Send cute clothes, ask to see photos, ask her how she's coping with the demands of 2 children. All the normal stuff.

Pupuce, there is a fairly recent Mumsnetter called Eidsvold who is on holiday at the moment. She is the proud mum of a baby dd with Downs syndrome who has just started commando crawling at 8 months. Hopefully she will see your message when she gets back.

I have a friend in her early 30's with a "Downs baby". From what I have observed, it helps to treat the baby like any other (bearing in mind that his/her development may be slower than other children's) but not to avoid talking about "Downs". This way I think you show acceptance of and love for the baby and support for the mother.

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Hi pupuce, I have a dd who has an unidentified genetic syndrome (not Down's). Certainly the initial stages are similar to grief and it is a long path to acceptance with many ups and downs. I think it's right to treat your friend's baby in exactly the same way as any other, but at the same time not to ignore the difficulties. Personally, I've found it hard to cope with people who cheerfully treat me and dd as if nothing's wrong, or play everything down, when in reality it can sometimes feel as if the world has come to an end. I've lost count of the number of people who think they're being reassuring by telling me dd will get there in her own time - avoid bland platitudes!

Sorry if this sounds negative, most people have been very supportive, but there are many people who do find it very awkward. Perhaps I would have been the same in their shoes.

exactly caroline5. I also have friends who think its helpful to say "oh my dds speech isn't very clear either" or something of that sort when it's so many lightyears away from what my son is able to do. (ie their children have conversations like any other 4 year old- with maybe a bt of difficulty saying th- when ds1's extent of a conversation is to say nanignan -meaning mummy's car)

We all seem to be saying "don't ignore the disability" don't we. I think that's so important from a friend. There are quite a few (ex) friends who have known ds1 since the day he was born and have never been able to say anything at all about ds1's problems. I find it really unnerving- almost like I have to deny his existence becuase it embarrasses them- and really quite weird, and I really can't be arsed with them.

Hi there Pupuce what a lovely friend you are to seek advice, I am sure you will handle it sensitively. I am a parent of a child with DS and the best advice I can give you is to be guided by your friend as everyone gets through the early stages differently. Some people literally need to mourn the baby they didn't have, others are straight into support groups looking for information etc - talk to your friend and take your cue from her.

Thanks for all these suggestions.
I have already had the intention to get her the prettiest dress.... I just love baby girl clothes so that was the plan from the start.
I did like the comment on BF... which I will repeat to her. Also went onto the links and found useful info.
So many thanks for all your testimonials !

Very LONG....

I can only echo what other's have said and share my experiences. If you are interested you can also join support groups as an associate member - which would mean you could gain further understanding and insight to help you support your friend further.

There is so much to say but one of the most helpful things I appreciated was that our friends and family love our little cheeky monkey and they are so proud of her. As others have said - do the 'normal' things - ask about the child fuss over them, as you would for any child.

There are a number of organisations - we belong to some local support groups. There was also a brilliant booklet we were given from one of these groups called - Just Kids - that book outlines all the wonderful achievements that children with down syndrome have managed. I can find out where you could get a copy. We actually took a copy out to leave with family in Australia.

I was unable to feed either with a bottle/breast as my dd has a heart condition and was feed via nasal gastric tube for the first three months of her life. I was able to express some breast milk for about the first six weeks she had that and I figured that she was getting the nutrional benefits from the milk - how she took it was irrelevant. There is also information available from the Australian Nursing Mothers Association regarding breastfeeding babies with down syndrome.

It is lovely that you are wanting to be so supportive and caring. My dh and I don't make a feature of dd's Down Syndrome because there is so much more to her than that. We do talk about issues and things that may arise but rather we focus and celebrate her achievements. We tend to keep our own counsel rather than share a lot of our concerns and fears with others - having said that we had some idea that perhaps dd had down syndrome given her heart defect - but we have done our grieving and that does not end yet - we will continue to grieve. Listening is a big help when you friend will feel ready to talk.

There is also a brilliant short story that a friend emailed to us - will also try and dig that up. If you want to pass my email onto your friend or you want to use it to ask anything - feel free. ([email protected])

pupuce - try this website - for you and your friend. Particularly found the short story called welcome to Holland very helpful to keep a perspective.

www.downsyn.com/index.html

coming to this a bit late, but I too have a child with DS. I can echo what others have said - people fussing over my baby was by far the best thing. I'll never forget my friend cuddling my daughter gently and saying that it made her feel all broody again. :-) What a lovely thing to say.
I understand that your friend does not want to get in touch with local groups yet - I really couldn't have faced talking to someone in person or over the phone and tell them how devastated I was that my child is like theirs.
As for the talking - well, for what it's worth, my daughter was saying 'Mama', 'Papa' (German for Daddy) and 'No!' at 18 months (and she's no DS superstar - I know kids who have much more language than her). She developed hearing problems after this which stalled her expressive language development a bit but we also use Makaton. She does about 15 signs and knows many more.
I hope your friend feels better soon - it is a bend in the road but not the end of the road.

I have just read all the messages on this thread and having a good cry! My sister-in-law had a c-section this morning and Zak was confirmed as Downs. Not a huge surprise as a nuchal fold scan had classed her as extremely high risk (more than 50% chance). She refused an amnio as she didn't want to risk a miscarriage. These messages have given me some idea of the positive things we can do to help. My dh (her brother) will visit her tomorrow, and our whole family hope to visit next week once they are out of hospital. I will def tell her about this site.

Hi Eyelash

Welcome to our exclusive, wonderful club!
You may have seen a message from me entitled 'My little gir;l has Down's', and like I say there, I swear to you, it may feel terribly sad for you all at the moment, but you'll come out the other end thinking that actually a child with down's is the best sort of child there is!!! Sorry to all other mum's with kids who don't have Down's, that was a bit cheeky,! Have you ever read that short story about getting ona plane destined for Rome and suddenly finding you've been taken to Amsterdam? If anyone hasn't read it let me know and I'll type it out, it's lovely and sums stuff up a bit. It's basically OK to grieve for the child you thought you were going to have, but don't forget to celebrate the wonderful child that you have. What you get back from a child with special needs is so amazing. You know that every tiny accoplisment is so special and means so much more. Everyone always compliment Lottie on how well she sits!!! It really makes me laugh, in a wonderful positive way. She's 16 months and not crawling or pulling to stand, in fact has no interest in using her legs at all, apoart from playing with them when she's lying down, but she does sit beautifully! Basically you get back more than you could ever dream of putting in. it's a competiton I'll never win!!!
Pass your sister-in-law my congratulations, she's a very luck lady with a very special, wonderful baby, and congratulations to you and your little nephew, you're in for some wonderful times! XX

eyelash, Congratulations on the birth of your nephew. Is he healthy otherwise? It might all be quite hard at the moment but I am sure he will bring your family much joy.
I just wanted to give you these links:
www.nas.com/downsyn/holland.html - 'Welcome To Holland' ,
and the really good www.nas.com/downsyn/welcome.html 'Welcoming Babies with DS'

Hi again, 2Under2 has kindly given us a link with the story about thinking you were going to Italy and ending up in Holland, thanks 2under2, saves me typing it all out, I've never seen that site before. It's a nice little story but I have to say that bit about 'never, ever getting over the significant loss of the child you dreamt of', is bollocks!!!! Of course you do, you've got a great incredibly giving child who can't love enough and makes every day a wonderful day. of course you don't think about the child you didn't have, you've got this one and they're fab!

Hi - just spotted this one. May have some useful suggestions from my work round the field..If and when your sister does want to make contact with other parents, other groups in the UK are Mencap (might have some good suggestions for France although I wouldn't guarantee it) and also Contact A Family, which is a fab organisation. Both of them have helplines. I think, from when I used to work at Mencap, that quite a lot of parents - not all, of course - do eventually find it quite helpful to network with other parents, if only because you can take quite a lot as unspoken...

There are also other forms of sign if and when any communication problems surface (I know because I wrote an article on this for Nursery World a while back!).

I'm not trying to be facile about this, and I really feel for your sister (I'll be 40 a month before I have my second baby, and all I've had is a nuchal test, so it's also on my mind!); the one thing I can say is that things ARE getting better for people with Down's...

Hi there - Bit late with this comment, but since I do have a beautiful 3.8yr old wee boy who is Down Syndrome - thought I might comment. Yes, I think shock, and disappointment hit you first - then if there are health conditions, (often there are) it tends to make it very scary - BUT saying that, for me personally, all I wanted was to find out, learn and understand all I could about Down Sydrome ( or Trisomy 21) as soon as possible. It helped when friends and family asked how I was doing, my husband, and daughter - and of course our wee man. I needed contact immediately, but I do know of others who tend to stay clear of any other families who may have a baby/child who is DS - they are still grieving and need more time to take it all in first. Talking, reaching out for help and finally accepting my new baby, allowed me to love him immmediately and treat him the same as I did my daughter. PS: He talks continuously, didn't bother signing, not interested - instead chose to speak LOL. All very,very different. Hes very social, and well liked - has brought so much happiness and laughter into our family. Just thought I would add my 2 cents worth LOL

Thanks for all the messages.
I have spoken to my friend a few times now, she has asked me to help her with BF as her DD won't latch on... I ma hoping she will persevere... I have researched the BF with DS topic and it is quite common for babies to latch on eventually - so worth persevering.
Her daughter has no medical problem that requires surgery. Obviously she is still very small so it is difficult to say more.
My friend is sounding like she is getting her head around this "surprise".
I will see her at the end of June for her wedding... and I'll get to meet her daughter then.

pupuce - I know the australian nursing mothers association do booklets about breastfeeding babies with down syndrome. It is full of handy hints - things like different positions to try , thigns to get them used to suckling etc. I think she/you might be able to buy one over the internet??

I will try and find a link for you.

www.mothersdirect.com.au/category7_2.htm

(sorry can't do links...) It is on this page - breastfeeding your baby with down syndrome and they do deliver to the UK. This might be another practical way you can help - it is $5 (AUD) so should be really cheap when converted to pounds.

If you still have trouble - I might be able to get a friend to get one to send for me or I can photocopy mine and send it to you.

Hope that helps.....