Harmony test came back positive for T21.

[Eversoslowly]

Got the call three days ago. I know this blood test is 99% accurate. I am devastated, scared, feeling sick and don't know what to do. I change my mind every 5 minutes. How can I ever reach a decision? It's just to heartbreaking to think about anything at this moment. I wish I would just wake up and this was all a dream. Yet I know I need to take an informed decision soon, even if there's no right or wrong but I need to be sure about it. Any advice from mom's who have been in a similar situation?

My chances for Down's syndrome from the combined test previously were 1 in 5 but I kept thinking positively, esp since there were no other markers indicating any health issues. The baby looked perfect on all scans (except for the NT being 2.9), it also had a nasal bone.

I'll have an amnio to confirm results tomorrow. I'm 16 weeks along now and can feel the baby moving. This was a much wanted pregnancy, we were ttc for years and finally succeeded through IVF (FET). I am 42yo now and am not sure if I'll ever be able to conceive again. My partner said he'll support me whatever decision I make but I can feel he's in favor of a termination. We also have a young DS who we have to think about.
I know this is such a personal decision but it would really help me to hear from other mums who had to go through similar. Feeling alone.

Oh dear - i'm rather biased I'm afraid - we have a 3 year old with DS and 2 older siblings (7 and 6). I'd agree with you totally on an informed decision - ask me anything you like and I'll be as objective as I can….xxx

btw by oh dear, I'm mean I'm sorry you're feeling like this. Not oh dear about the DS! That's no bother really!

Firstly, have a hug. A big one.
Less than a year ago I was where you are. Words that cover how I felt include, shock, fear, grief, worry, disbelief and denial.
The day I got the news, I lost it completely.
It took some time to calm down, but once I did, there was no way that she was going anywhere. Of course everyone is different, and we all have to do what is right for us, but as I told my OH, If I keep the baby, youll never forgive me, If I get rid of it, Ill never forgive myself.. Thankfully he loves me!
It was a hard pg, physically I felt great, mentally I was on a knife edge.
My partner accepted my decision, I nearly murdered my mother, and my teenage kids showed a maturity way beyond their ages. I had family members who were rubbish, and acquaintances who were pillars of support.
Myself, I disregarded all of the clichés.
"Think of your other children" Yup. They will love her. She is their sister.
"What'll happen to it when you die?"...
Well what will happen to any of my kids. They'll live on. With each other for support.
"How will you manage?"
The way I look at it, I could have a perfectly 'normal' baby, who got ill or had an accident and needed extra care. That's what life throws at us. Me? I just have a heads up!
Anyway. On 7th March, I met an amazing person. She was small and weak, she was born with a heart condition, she was tube fed, and very tired. She underwent open heart surgery at 12 weeks, which was bloody hard to watch, but she made it through and is like a different baby. She's the most wonderful amazing superhero, and she is BETTER than any other old baby, out there. She's the easiest to care for of all my babies, shes cute and funny and basically, although I wouldn't admit it, just like any other baby.
Everyone loves her. especially me!
I have absolutely no illusions that life will be hard at times. Maybe often. But it wouldn't be life without my sweet girl in it.
I don't know if this is what you were looking for, I hope I haven't made your decision harder, but its all so fresh in my mind, what you are going through, that I wanted to share. x

No personal experience but have a very inspirational acquaintance named Hayley who has a daughter with Down's syndrome. Her blog is downs side up and you are exactly the kind of person she seeks to reach out to. Please please have a look at it

I work with adults who have DS and are living independently in the community. They have the same hopes and dreams as the rest of us but some of them might need a bit more help getting there.
I don't know why I'm posting or what you might get out of it. Just that maybe life with a child with DS doesn't have to be too different to life with any DC.
Best of luck with whatever you decide.

I'm not sure if this helps but our boy is 3.5 years old and so far:

We've been to america, Italy, France and uk hols
Eaten out loads
He walks to nursery and back (25 mins each way) either holding hands or walking next to me, which is more than his peers seem to do.
Has ridden ponies and gets back on after being shaken off and also conquered his fear of tunnel slides
Has had open heart surgery (a blip in time)
Survived a couple of theme park days without a buggy, just built in rests.
Knows makaton very well - 100s of signs. Starting to talk now.
Know most of the alphabet - to read, sign and sound
Enjoys digging for potatoes
Can swim with armbands
Knows to say please and thank you
Behaves fine - no antisocial behaviour - well odd blips but according to nursery is the easiest they have
Tidies up after himself
Eats adult food - thai, indian etc - we all eat together as a family. He needs a sauce or gravy or something but then i do too
Sleeps 7:30-7pm solidly
Has food intolerances (but then that's a massive problem in our family anyway).
His balance is dreadful so needs watching on stairs still but that's a temporary problem! It will improve over time.
etc etc

What an awful place to be. I know none of us ever want to be there - am 19 weeks pregnant myself- and I would never criticise or judge anyone else.

I have a severely disabled goddaughter who has lots of problems and can not speak, communicate in any way or connect with other. people. She is completely isolated and shows no signs of happiness ever. She also has severe epilepsy and although she is 13 she has the development of a baby between 6 and 18 months. Her parents and older sister would not be without her but their lives have been changed forever by her and at times have been very hard and stressful. There is no hope of improvement and no prognosis because what she has is so complex and rare.

On the other hand, I have a cousin with Downs Syndrome. She is 24 and leads a fulfilling, happy life. She has a job and a boyfriend - he has DS too. Her parents and brother adore her. She does not have significant health problems and lives in a supported housing place for young adults with DS and other learning needs. She loves it. She can cook and is very independent- does her shopping, ironing, buys clothes. She loves music, the cinema, swimming. She has help with lots of things but it is guidance rather than intervention. She is great company when we meet and has a fantastic sense of humour.

I am not offering advice or saying anything helpful. Just some personal experiences of two families who have found themselves having babies with special needs and how it has affected them. Interestingly , neither of them would make a different decision if they had known beforehand.

Oh thank you everybody for reaching out to me and sharing your stories! They are so touching. I'm so so grateful.
TelephoneTree reading about your son made me smile, thank you.
Chestnut100, thank you for the info, I will definitely look at your friend's blog. At the moment this is all I do, collecting information.
The hard thing is that one never will know the degree of mental handicap beforehand.
I had the amnio this morning, results be be expected by Friday. More waiting. In the meantime I'll meet with a pediatritian specialized in Downs syndrome this week and also hospital psychiatrist. The doctor I saw today was very pro abortion. He said one only ever gets shown the positive cases of people with downs on the internet and TV, never the insitutionalized ones that are very poorly.
SaggyandLucy, I feel the same, I'm not sure if I could ever forgive myself. But then the statistics are mindboggling, 95% of women who find themselves in the same position decide to terminate.
I just need more time I feel. Thank you ladies x

hello - how very stressful. poor you! Another blog you may find inspiring is the futures rosie blog. it is written from the fathers perspective and may help your partner imagine what life will be like. xxx

Time is really important. The initial shock will wear off and leave you with a bit more clarity.
Im actually quite upset by that doctors comments.
Obviously Im biased, but seriously? He actually used the term "institution"? in 2014??
Life is full of good and bad stories. And its generally only the two extremes that make it to the internet! And more often than not its the worst! Having any child is a risk, anything can happen at any time, to anybody! Ive worked in care homes with people with special needs and most of them would not have been picked up before birth.
With regards to those statistics, Im 100% pro choice. Everyone is entitled and 100% right in making their own choices.
What makes me sad, myself, is the fact that when I hear this, and look at my beautiful Lucy, and Telephones gorgeous boy, I see 95 other lovely wee people who aren't enriching the lives of their families and everyone that they come into contact with.
Rest up after your amnio and take care of yourself. You'll come to the right decision for you, whatever that is. As Telephone says, if you want to PM me, that's fine.

I would get yourself proper up-to-date info if you can - I find that generally doctors are very ill informed. Down syndrome association, parents of children with DS, Downright Excellent….they'll have proper info on the reality of life.

It's very different growing up with DS now than it was when I was a child. These days everyone is encouraged to treat their baby/child with DS in the same way as any other and expose them to as much of life as possible - and we're reaping the benefits - it seems that todays child with DS can achieve significantly more as a result. Funny that! You see posters everywhere saying how important it is for your child's development to challenge them and stimulate them and so true! DS or no DS!

p.s. our boy went mountain biking today - round moderately difficult trails on the back of DHs bike while the rest of us floundered around faffing with our gears and falling off the trail in to the undergrowth…He absolutely loved it and kept asking if he could go round again!

Advice I thought useful was to try to somehow 'live' or feel or immerse yourself in the consequences of making either decision.

As crude as that is, it may give you some indication of the true feelings you have.

All the posts here have been very positive. However this is your life and you must make the decision which is right for you and your family.

I have no doubt you will come to the point where you know the right path to follow. And whichever path that is, you will find peace at the end.

xx

Absolutely Elderflower. We have all been positive, and are happy with our decisions, but everyone is different and we do have to make our own choices and I won't judge anyone.

So sorry you're having a tough time OP. The other posters on here have put it far more eloquently than I can but I also have a little one with ds, diagnosed after she was born. She is now 13 months old and the cutest, funniest little thing, and aside from a few hospital trips and a slower pace of development (e.g she's not yet crawling - though trying very hard to - and just learning to clap and wave) it really hasn't been any different to looking after my other 3, who are now 9, 7 and 5. We still don't know how her learning disabilities will manifest themselves, but we've had great support so far and feel really positive for her future. I know it must seem like such a scary prospect for you now - I was scared when I was told my daughter had ds - but I really believe much of that fear was about the unknown. Now that we know more, it's a million times better than I could have imagined in those early days.

Thank you everybody.

The last few days have been hell and I could not write anything.
I got the confirmation from the amnio that the little one indeed has T21.
I did another scan and there seems to be no other health issues, so far... this makes things even harder actually. The sonographer wrote down the sex of the baby on a piece of paper... I could not bring myself to check yet.

I called ARC a few times and they were wonderful and so helpful. A real life line.
However, I still have not made a decision. I will use today to talk to more well informed people/ associations and make my mind up by Monday after seeing the counselor again.

My son can feel something terrible is in the air, he's tearing up the house, throwing things around and being short tempered while I'm locking myself away, being upset on the phone or in bed crying, being angry at insensitive relatives etc. I feel so sorry he has to see me in this state.

The medical professionals I spoke to so far definitely don't paint a rosy picture and seem to want to steer me in one direction.

The unknown factors and the handicap spectrum of T21 are just so vast, it makes coming to terms with any decision so so hard. For me personally anyway. I know I will get there, I have to.
It's esp the future of this child that worries me and if we'll be able to cope long term. To know that all people with Downs eventually get Alzheimers also breaks my heart.
It's so nice to her about your little ones, pinkpip, Saggy and Telephone. I'm happy I found this forum.
All the best, x

If it helps Everso, I have had a termination for T21. I agree, it is a much harder decision (at least I think so) than when you are told your baby has a condition incompatible with life. You know your baby can live. The question is, what kind of life?

My decision was largely driven by seeing the life lived by a close friend of a son with DS. She even told me, after my termination, that had she known what would be the reality of her life, she may well have acted differently (she refused all tests when pregnant because she had a history of miscarriage). She died, aged 53, from a stroke earlier this year. Her son is 15, just out of nappies and with a few words. Her husband has Parkinson's. There is also a 12 year old DD. She had held that family together and now it is falling apart. They have moved abroad and there is a lot of effort begin put into preventing her son from going into care, but there is no family in that country, none here, and her husband is just barely functioning.

For me, it wasn't just about babyhood or childhood, but the long term picture. I couldn't face it.

oh everso - I really do feel for you. I had a funny moment and what I did when I was PG was to make the decision to terminate and sit with that for 4-5 days and then switch to not terminating and sit with that for 4-5 days. That really helped me.

It is very very tough being so torn.

Lots of love
xxx

Just to add, of course there are a whole range of individual experiences, just like with anything in life, but from the groups I now belong to (both in 'real life' and through Internet forums) it really does seem that it is unusual for a child with ds to still be in nappies at 15, in fact the 'average' age for potty training (according to the DSA) is around 5. In terms if the Alzheimer's issue, it isn't true that all adults with ds will inevitably have Alzheimer's, although there is a high probability. However, there is a lot of research currently happening around this and definitely hope for a more positive future. I know I sound like I'm burying my head in the sand, but things really are changing, and the reality of having a child with ds may be very very different from what you are imagining and fearing.

Sorry again that you're going through such turmoil OP. Thinking of you and your family.

Hi OP, I'm really sorry to hear your having such a hard time and the not knowing is so difficult.

My son is 2 years old and has a severe genetic condition (not diagnoised untill he was 10 months old) he can't walk, sit up, has a tracheostomy etc, its life limiting and it's hard we do so much for him and our life's have changed so much, but I can't imagine my life without him I absolutely adore him and having him had changed me.

In pregnant with baby no 2 who is unaffected and I worry about the impact it will have on him growing up, but will cross that road when it comes to it.

Whatever you choose to do will be the right descion for you and it's defiantly not an easy one. Thinking of you. X

OP, so sorry to hear of what you are going through.
Huge hugs, and wishing you the strength to reach the decision which will be the right one for you and you family.
as many people have commented, everyone has the right to choose,a nd their decision is personal.
I have recently declined amnio following high DS bloods at 17 weeks after a series of MCs. I reached the decision that I could live with a DS baby, but not with causing a MC in what may be my only chance for a baby. However, I do honestly wonder what I would have done faced with the odds earlier (i.e. before feeling movements) or without a history of so many recurrent MCs.
Once I had made this decision, the doctors were very supportive about the spectrum of DS, and talking about what to do would he be T21 positive once born. I was previously unaware that sometimes signs can be so subtle that they need to blood test the baby once born to be sure if +ve or -ve. I hoe you find more support and help should you decide that you need it xxx

I'm really sorry that you're in this position, OP. I recently had a termination for medical reasons and the low point for me was definitely the decision making process. Even the delivery at 30 weeks was better than the agony of deciding what to do.

I would advise you to think about it not just from the point of view of a DS baby - which, as people have said, is really not that different to any other baby - or even a DS child (again probably not all that different) but from the point of view of being responsible for a DS adult as well. Some adults with DS are able to live independent lives but many are not - if I were you, I'd want to do some research to discover what is the most likely outcome.

I'd have a read of the special needs forum in here (that really helped me) and DS specific forums to get a sense of how it is for parents of DS children day in and day out. The reason I suggest this is that I find it noticeable that, when people are considering whether or not to terminate, parents of children with special needs can present their lives more positively than they do when talking to other parents of children with special needs. One of the things that really came across when reading the forum on here is that it seems like it is virtually impossible (because of the shameful lack of support that you get from the council/NHS) to continue to work. If that's important to you (it is to me), that is worth thinking about.

For me, the process of decision making was really about realising what my gut was telling me. Even though it may feel to you right now like you can't make a decision and you're genuinely ambivalent, you will find that your decision becomes clearer.

Notinagreatplace, I am really sorry for your recent loss.
I agree that the OP should think about life as a parent of a baby, child and adult with ds rather than just the first few years, although very few of us can be certain of what adulthood will hold for our children. On my darker days I do worry a lot about my dd's longer term future, but I know as a parent there is lots I can do to help her live as independently and - most importantly- happily as possible. I did just want to correct your point about working - it definitely isn't impossible with a baby/child with ds - I do it (part time and mainly from home, but that's a choice I made long before I had dd) and I know many others that do too (both full-time and part-time). It is a juggling act, but I found that the case with all of my children when they were small. And sorry if I come across as giving an overly positive view, as I've said before, dd is only 13 months so it's early days for us - but at the moment things are pretty positive. I do have days when I feel sad that dd isn't 'NT' but most of the time it honestly doesn't make a difference to me, or to dh, or to our 3 other children as far as I can tell.

Hi Everso, I have an 18 year old dd with Downs. She is everything to us and her ds14. She's the total gaffer of both home and school. Tons of confidence, loves her life, loves her friends and family and currently is obsessed by both Frozen and The Walking Dead!

We feel very positive about our life with her and we are now very much in the 'adult' phase.

It's such a tough decision, unimaginable to have to make it. I wish you best of luck with it.

I should also mention I work full time, with very little outside support as does dh.