Down syndrome confirmed

(74 Posts)
Umanayana Tue 14-Jan-14 20:27:06

We had the results from our Cvs today and our precious little girl has down syndrome. We are very undecided about how to proceed. My heart wants to keep her but my husband is very unsure. We have three other children, two teenage boys and a toddler daughter. This is to be our final pregnancy, whatever the outcome
I would appreciate any advice/experience s. Particularly from any parents of children with down syndrome. Thank you wise mumsneters.

BunnyBaby Sat 01-Feb-14 10:26:39

Just so no one thinks I'm being hypothetical my brother survived a condition only uncovered at age 15 and had a lot of interventions until 30, also I have 2 cousins who have a different condition which killed one at 8, the other, thanks to GOSH and bone marrow transplants is a healthy adult. I know lots of downs adults with excellent support leading busy lives (I volunteer with a group), whereas members of my own family who would have shown as 'perfect' on scans have had their health taken away from them in an instant.

lougle Sat 01-Feb-14 14:51:47

BunnyBaby, that's not the point though is it? Whether you agree with it or not, women do have the choice as to whether they continue with a pregnancy when medical conditions are known to be present. At this point in time, women do not have the choice as to whether to end the life of their child who later develops/is diagnosed with a condition. The fact that life can be changed in an instant for anyone is irrelevant.

If someone has a prenatal diagnosis they have the right to choice. It's deeply insensitive to post your opinion about it once someone has disclosed that they have TFMR.

BunnyBaby Sat 01-Feb-14 15:48:35

Lougle, at no point have I said that no-one should be entitled to make their own choice, and at no point have I said I'm judgemental of those who make any choice, so your comment confuses me?!

lougle Sat 01-Feb-14 15:51:22

Read the post you made, straight after Moten's post. Now think of how it could (perhaps must) have made her feel?

BunnyBaby Sat 01-Feb-14 16:02:31

My post to Uma was made with the best of intentions and in response to her original post which started the thread. It makes specific references to her post.

Chewbecca Sat 01-Feb-14 16:10:58

Hope you are ok Uma. Haven't read the whole thread but I wanted to recommend a Facebook page I follow (if you are on FB), it's called 'Down's Syndrome - Raising Awareness and Shifting Attitudes'.
It might be an interesting read in your position I think, it certainly describes the ups and downs of the journey they've been on over the last few years and gives a detailed, realistic view of their lives.

soucieusemum21 Sat 01-Feb-14 17:55:26

Thank you Monten and Nyldn, Tuesday will be the result of the CVS. CVS was done really fast, it takes less than 15 seconds if the baby is positioned well- not what I expected.
In the scan it shows that I have 1/2 chance of down syndrome +> 99% harmony came back positive for down, it also showed that there is liquid below the skin (around the chest) which might suggest heart failure and chances that the baby might not survive much longer. As the ob said "baby is not healthy no matter what the result shows..." I do not know why in a way I felt relieved to know that. I feel like it was not meant to be. It is so hard to have to make the choice and sometimes it feels better if it comes naturally...

I am trying to think positive as well for better times ahead. Good luck to all!

TelephoneTree Sun 09-Feb-14 21:58:20

Hi - only just seen this. We have a gorgeous boy with DS who will be 3 on Tuesday if you would like to PM me or me PM you? x

alizeeod Wed 12-Feb-14 21:44:05

Hi OP, my heart goes out to you.
I do not have children yet (hopefully soon!) but thought I'd tell you what I think for what it's worth.
I'm a nanny and looked after a toddler for a year (last year) and his older brother has DS (he is 10). I had a conversation about abortion with his mom once and she told me she was strongly against it (I'm pro-choice).
To be honest, I witnessed this family's life daily for a year and if you keep this baby, I hope you are aware of what you'll put yourself and your family through.
This child had leukaemia as a baby, then open heart surgery, he goes to hospital regularly because he is always very poorly, he's also very aggressive (I've seen him throw knives at his brothers), cannot go to the bathroom unassisted, and is generally a nightmare.
You can tell his mom loves him but is so very stressed out and constantly worried/exhausted.
I personally would not keep a child with DS as its not a life for them in my opinion and my life would be over, you pretty much have to be a carer for the rest of your life.
My aunt who is in her mid forties terminated a pregnancy at 5 months after finding out the baby had DS. It was her first child and she'll probably never have children now.
You have other kids, so I guess take comfort in that if you decide to terminate the pregnancy.
Good luck!

TelephoneTree Wed 12-Feb-14 21:55:35

I think each child is different, with or without DS. For every health problem / issue that may or may not occur with a child with DS, I personally know a typical child who has one or more of these.

Food for thought.

Signing up to be a parent is actually all you can control….

TelephoneTree Wed 12-Feb-14 23:06:03

alizeeod - what you have described is absolutely not the case for all children with DS, or even the majority. In fact - what you describe is the first time I've heard that out of lots of children with DS that I have met...

alizeeod Thu 13-Feb-14 01:11:58

TelephoneTree, I'm not implying all children with DS will be as difficult! Just giving OP insight into what my personal experience has been, as most comments make it sound like raising a child with DS is a cake walk.

TelephoneTree Thu 13-Feb-14 10:06:37

I'm not going to say too much as I don't know what Uma decided as she hasn't reappeared on this post but I will say that you stated that your life would be over if you had a child with DS and that you don't believe it's a life for them (your opinion I know) and that you hope she would know what she would be putting herself and her family through….

I think you are basing those statements on your experience of one child? Please don't make statements like that as fact, as they are simply not true. You are wrong. By all means present what you have observed and have an opinion on it but just be careful…..there is a whole world and life out there that you have no experience of.

TelephoneTree Thu 13-Feb-14 10:07:24

and for what it's worth, I am very pro choice and people must make the decisions that are right for them. I would hope that they are based on reality rather than misconceptions though.

realnappiesmum Thu 13-Feb-14 21:03:28

Alizeeod, as a mother to a beautiful girl with downs syndrome I am very very hurt by your sweeping generalisation of all children with DS based on one child you have met. Your prejudice is an absolute disgrace.

mummaxmas Thu 13-Feb-14 21:18:34

I feel for you, a mother always wants her baby but circumstances make her doubt her desicision.
It will be hard and she may have health problems, but she will love you and you'll love her and so will everyone else when she arrives.
It's always the mothers choice, whatever you decide make sure it's your choice x

puppythedog Thu 13-Feb-14 21:25:52

I wanted to post simply to send the hope that you are able to find the right answer for you.

If I can offer my counsel find out as much as you can about what the consequences of continuing with your pregnancy would be but also the consequences of ending your pregnancy.

I'm not sure what I can offer being a man in this discussion. Mrsthedog and I have conversations about this, there is a close familial experience of severe learning disability. We don't find an answer other than to hope we don't have to think about it.

The very best of luck to you and you other half in you future.

Yani Thu 13-Feb-14 21:50:53

I've read through all the replies and think you have got some sound advice.

My younger dsis has ds. Although I believe she is fairly high functioning.i.e. she can wash, dress, cook simple meals, catch a bus etc

My father left us because he couldn't cope with having an imperfect baby. My dm went into protective overdrive and never really stopped!

My dsis lives semi-independently with another special needs friend, their carers come in three times a day to help. Their carers are absolutely amazing. My dsis is invited to all the careers family gatherings, has been taken on holiday with them and has given my mum total peace of mind.

My dsis is one of the happiest, sunniest, loving and giving person you could ever wish to meet. She is extremely content and secure.

However, I grew up resenting all the attention my dsis had. Every family decision revolved around her and her needs/limitations. I feel that I was sidelined somewhat. As another poster said upthread it made me very independent and I ended up leaving home when I was 17. My sister and I are not close, but I love her dearly.

I feel for you as the decisions you are facing are far-reaching and extremely difficult.

alizeeod Fri 14-Feb-14 03:10:30

I am certainly not prejudiced thank you and never said in my comment that all children with DS have behavioural problems like said child. I just shared my experience because all other posters make it sound like raising a child with DS is easy, which it clearly isn't! I felt OP needed to hear the bad as well as the good.

alizeeod Fri 14-Feb-14 03:28:20

I think reading through Wikipedia's DS page like I just did would be something to consider OP as it will give you an UNBIASED and realistic idea of the challenges you WILL face raising a Down's child. It lists all the health and behavioural problems, life expectancy, average IQ etc
It also says that most pregnant women who discover they carry one terminates the pregnancy, so I'm clearly not the only woman who thinks this way.

realnappiesmum Fri 14-Feb-14 06:52:27

Anyone who wants up to date and unbiased advice and information on downs syndrome should refer to the Downs Syndrome Association or to online support group such as Future Of Downs which is run by parents of children with DS for and should not refer to Wikipedia.

TelephoneTree Fri 14-Feb-14 13:07:28

Alizeeod, a poster has told you that your comments have been very hurtful so usually one would respond with some sort of acknowledgement of that rather than more aggression.

Realnappies, I agree. To get a good overview of any 'syndrome' in practical terms then the sensible way forward is to collate as much info and views as possible from the families of those with experience. Then one can make a more informed decision (whichever is right for you) based on reality rather than fear or old fashioned information. It goes without saying that you may be that you may either wish to terminate, or you may not!

pinkpip100 Mon 17-Feb-14 01:03:03

Alizeeod, I also found your post very hurtful and offensive. As the op asked for comments from parents of children with Down's syndrome it was fairly likely that a few of us (my dd was diagnosed at birth) would read what you have said. Your experience is of one child with ds, and therefore not reflective of all (or even most) children. It's also not helpful to the op to use scare tactics by saying things like 'I hope you're aware if what you'll put yourself and your family through' hmm.
Op, I'm really sorry you're going through this. As others have said, there is no right or wrong answer, just what you in the end feel is the best for you and your family.

Although having a baby with additional needs was not what we expected or indeed hoped for, and certainly brings added complications, our dd also brings us a huge amount of happiness and I couldn't imagine life without her. I have 3 older children (aged between 9 and 5) who adore their little sister, and - so far- I feel that our experience has brought us closer together. I know there will be things I have to fight for on her behalf as time goes on, and we don't know what her future will hold (although do we know this for any of our children?), but I don't feel as though any of our lives will be ruined by having her here. Times really have changed, and there is so much more help and support out there.

pinkpip100 Mon 17-Feb-14 01:05:26

Gosh sorry, I have just realised that this thread was started over a month ago. Op, my thoughts are with you, whatever path you have chosen.

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