Confirmed Down syndrome - what to do?

[impossibledecision25]

I am 43 and this is my first pregnancy. We went though IVF to get to this point. We had several early scans that all looked fine at 6,8 and 10 weeks. However, we got to our 12 week scan and the nuchal fluid measurement was 6.5mm. Our initial screening came back as 1 in 2 for each trisomy. We then had the CVS test which confirmed our baby has Down syndrome.
My partner and I now feel like we have the most difficult decision to make. We want to be fully informed and so are doing a lot of reading. There are a lot of positive stories online but I guess the reality is we don’t know how what the full impact will be for our baby and what additional needs and co-morbidities they might have. We’re also thinking about what happens when we’re not here, especially as we will be older parents. And will be both still be able to work. But the thought of ending a much wanted pregnancy and a life feels so hard.
i guess I’m wondering if anyone has been in a similar position and has any advice?

I think a lot of people talk about happy, sunny DS children, but we are only children for a small portion of our lives. When we have a baby, we aren't just having a baby, we are making a person. What sort of life will that person have?

Once our DS person leaves school, what will happen? You are 43, this baby will likely outlive you. Who will look out for them? They are less likely to have a caring life partner and children than a non DS person, so you're either leaving them alone in the world, or burdening a sibling.

I visited my mother in hospital a couple of years ago and there was a DS lady on the ward having treatment for one of her numerous health issues. This was a relatively high functioning lady, she had a part time job in a cafe and lived in an assisted living flat. But she was alone in the world except for a very elderly mother. And when she had treatment in hospital, she was like a frightened child, she cried if a needle came near her, she didn't understand why she needed tests and treatment and it distressed her greatly. And that is her life going forward. Her mother will die and she will spend more and more time in hospital with her various conditions, alone in the world and like a frightened child.

Life is not always a gift and people aren't just there to give joy to other people. Life can be a burden to the person living it. This is true even for people without health conditions, but even more so in the case of a person with health issues and developmental delay. I wouldn't risk that life for my child. I know anyone can become disabled at any point in life, but if I could prevent it for my child by termination of a pregnancy I would.

Im sorry you’ve found yourself in this situation op.
I had a surprise pregnancy at 40, I already had three children.
The result from the 12 week scan and blood test showed a 1/15 for DS.
We decided that if the baby did have DS, we would not continue with the pregnancy. One of the reasons being that I wouldn’t knowingly add a child with unknown additional needs to our family. I did not deem this fair on the children we already had.
I had an amniocentesis and the results were negative for DS.
We continued with the pregnancy and he is now 16 months old.
I don’t think there is a right or wrong way to feel in this situation and only you and your partner (if there is one), can ultimately make this life altering (whichever way you choose to go) decision.

We knew that we would definitely terminate if we were unlucky enough to get an ante natal confirmation of Downs.

Not saying that would’ve been easy to come to terms with, but it must be such a hard decision if you’re torn between carrying on with the pregnancy and not.

I have a 4 year old with Down syndrome. We found out during the pregnancy. While it was scary we knew we wanted to keep her. She’s had no health issues. She’s the best thing that’s ever happened to us. I’d recommend Positive About Down Syndrome on facebook for a bit more information.
While we don’t know what the future holds for her, I don’t think anyone really knows what their child’s future will be.

Well said.

That poster is a pro life, forced birther, anti abortionist so will say whatever she has to, to make other women not terminate. Those posters need to fuck off with their agendas.

eta, she is apparently a paediatric nurse, so she will absolutely know that some children with DS have lots of struggles.

Make sure that the people you listen to are the ones who tell you that they are on your side, no matter what you choose do.

What do you hate about it? I thought it was a good analogy!

Not to give false hope but I remember following a thread which a lady posted previously , maybe last year. She was told her baby had a trisomy (Apologies I can't remember which). They decided to keep the baby and baby was born perfectly healthy..now I know that is probably very rare that the medical team would get it wrong but I remember thinking 'gosh imagine they could have terminated a perfectly healthy baby'
Obviously it is a very tough decision to make, especially when it is a much wanted pregnancy. I wish you the best.

I would also like to add that I have a family member who is severely autistic. Leaving him when they pass is his parents biggest worry and one that keeps them awake at night. They have other children however so I think they feel that he will be cared for by them. But that's a big expectation , having siblings doesn't guarantee his future care. I'm sure this is something that will influence your decision too.

I have a nephew (11 and a half now) who has Downs. Although his parents, my db and sil, have never said out loud, they definitely wouldn't have had him if they had known. They split up when he was 4, and now live in separate countries. The chid lives with his Mum in term time, and with db in the holidays. He is non verbal and only just out of nappies. He is tall and heavy already and veey strong, and uses his weight and force to get what he wants. He is also getting sexual hormones and continually tries to grab breasts and push people over if they refuse him things. My dm is 72 and he tried to slam her in-between the car door and the car last week when he was refused the front seat (he's not allowed in the front because he tries to use the handbrake and gears whilst you are driving). He deliberately seeks out stuff that isnt his and breaks it. I have had to ban him from my house because he hurts my two boys and breaks their toys on purpose. He is an extreme case, I know, but he is only getting stronger and bigger and at some point will have to go in to some kind of sheltered housing because he's going to hurt someone. He has no other medical problems, no other diagnoses. He is very sexual and gets his penis out and makes it hard a lot. Apparently, the sexual hormones are high and unchecked in Downs children, that is what one of his carers told me, but i don't know how true that is.
I don't want to put you off, but i think you also need to know the truth of what it could be like Good luck xx

I have a nephew (11 and a half now) who has Downs. Although his parents, my db and sil, have never said out loud, they definitely wouldn't have had him if they had known. They split up when he was 4, and now live in separate countries. The chid lives with his Mum in term time, and with db in the holidays. He is non verbal and only just out of nappies. He is tall and heavy already and veey strong, and uses his weight and force to get what he wants. He is also getting sexual hormones and continually tries to grab breasts and push people over if they refuse him things. My dm is 72 and he tried to slam her in-between the car door and the car last week when he was refused the front seat (he's not allowed in the front because he tries to use the handbrake and gears whilst you are driving). He deliberately seeks out stuff that isnt his and breaks it. I have had to ban him from my house because he hurts my two boys and breaks their toys on purpose. He is an extreme case, I know, but he is only getting stronger and bigger and at some point will have to go in to some kind of sheltered housing because he's going to hurt someone. He has no other medical problems, no other diagnoses. He is very sexual and gets his penis out and makes it hard a lot. Apparently, the sexual hormones are high and unchecked in Downs children, that is what one of his carers told me, but i don't know how true that is.
I don't want to put you off, but i think you also need to know the truth of what it could be like Good luck xx

I hate it too. It’s not a good analogy at all in my opinion. It completely ignores
the fact that children with disabilities can go through a lot of suffering and pain. It completely ignores the fact that parents of disabled children are often utterly shattered, with no help, no respite available and worried what will happen to their very loved children when they are no longer here. Trying to pretend that it’s all great, just ‘different’, is a load of bullshit, usually spouted by clueless people or pro life people.

Sorry you are in this predicament OP, I haven’t been in your exact situation but do have 2 different experiences of the choice of termination in my 40s…

I had my first and only child at 42. The pregnancy went well until I think around 20 weeks - but with extra monitoring (sometimes weekly trips to hospital) and precautions such as painful steroid injections to ensure baby was ready for an expected premature delivery by c section. I also had excess fluid posing a risk to baby
At a standard scan a head measurement caused concern and everything went crazy. I was lying on a bed and all of a sudden lots of medics appeared and pulled the curtains round me and rushed me in to my consultant. I was in tears and had to phone my husband to come from work an hour away.
We were referred to the specialist brain unit in Oxford from then on (a good 1.5 hour journey) and I was prodded and poked about (sometimes painfully) at various appointments before we were offered termination at around 30 weeks pregnant, on a chance (I forget the odds) the foetus could be born with one of a million things wrong, from mild to severe disabilities. It was an horrendous experience.
We decided against the termination that late on.

Thankfully, baby was born absolutely fine, by elective c-section due to the amount of stress I’d been under from what had happened and the extra fluid, a few weeks early. She is now a healthy 6 yo.

Four years later, age 46 I fell unexpectedly pregnant. It was a huge shock - but taking everything into consideration re. my age & the higher risk factor with that, the experience of my first pregnancy, and financial and lifestyle factors, we decided to terminate early on.
It was a very difficult decision we did not take at all lightly But it was the decision we made and so was right for us. No decision as big or life changing as termination comes without what ifs / regret / guilt etc, it’s a natural process. The fact is whichever decision you take you’ll never know the outcome / recriminations of what the other decision would have been. You can only make the decision for yourselves, now, as your lives will be changed forever.

So please be assured that whatever decision you make will be the right one for you. Also you are obviously researching and getting informed and that is the best you can do.

Having a baby growing into a young child later in life (let alone with additional needs) isn’t easy & from experience, exhausting, the older you get. The effect it can have on you, your relationship, lifestyle and you mention your work - everything you’ve been used to for a long time, changes. And those changes are continuous as the child grows, starts school etc. Support can be harder to come by with your own ageing relatives and many of the other mums you’ll meet being 20 years younger than you.

Key is, yes, this is a longed for baby, but they will grow up into a child and adult with, at the moment, an unknown amount of additional need of you as you age.

Also, as with all pregnancies, you can’t foresee other complications that could arise should you progress.

I wish you the very best with whatever you decide to do xx

Yeah it goes hsnd in hand with the it's not a disability just a different ability nonsense,.

I worked in a home for people with learning disabilities. If it was my child I'd be finding a place like that home. We had people who'd lived there for over 20 years and it was a happy place. At Christmas you couldn't move in the office for all the piles of presents as the staff had a budget for each resident. Some had presents from family so there was always a bit extra for the ones without family. They all had advocates and social workers so everyone had visitors. Seaside holidays in caravans in Cornwall.

We had two DS guys, they were at the severe end but had a nice life. It was a great comfort to their parents to see them happily settled.

I do think it is kinder to find a good home before parents get too old or die. If course the challenge is finding the good home.

I used to ask the manager if they'd have me if I got dementia - she never committed.

The two residents where I worked with DS weren't sexually inappropriate in any way. Obviously that doesn't prove anything. We did have a resident with another condition who liked to grope breasts.

It’s just horrifically twee! And possibly it reminds me of the first time I heard it at an NCT class, naively blase about the fact that it would never be relevant to me 😏. I’m struggling to find the Ikea one I read once. I’ve found this, which may or may not be the one I remember. I still like it though!

“❤ ❤ ❤ The Ikea Story ❤ ❤ ❤
by Shana Anderson, Reeve's Mom and Founder of Reeve's Tees

More than a decade ago, my husband and I bought our first house together. It was empty and bare. I was so excited to go pick out the perfect furniture to make it a home. A friend came over, and said, "Have you ever heard of Ikea?" she asked. "You really need to go there."

"No," I said, "what is it?"
My friend replied, "It's a furniture store. It's about a 3-hour drive, but you just have to go."
"Is it nice wooden furniture?" I asked.
"No - it's mostly particle board furniture," she replied.
"Will we save money?" I asked.
"Not really," she said, "You will probably spend more than you want to."
"Does it come assembled?" I asked.
"Oh no - in fact, you have to go to the warehouse, find the boxes, load it into your car, come home and put it together yourself with hard-to-follow instructions and tiny tools," she replied.
"Oh - and you and Jason will probably fight a lot when trying to put it together!" she laughed.

I furrowed my eyebrows: "No offense, but Ikea doesn't sound so great... Long drive, cheap furniture, more money, lots of work, and fighting with my husband...hmmm... why do we need to go there?"

"Just go,” she replied. “You'll see…”

We went and only then did we understand.

You go to Ikea thinking that you are "buying furniture" but pretty soon you are eating meatballs, taking a circuitous path through a museum of modern design, and seeing new ideas that you had never considered.

Ikea opened new doors for our family. My son fell in love with their wooden trains and soon began an entire train collection. Ikea inspired me to set up a home office so that I could work remotely and spend more time with my kids. And Ikea encouraged my husband to redo the cabinetry to make our home more functional.

In addition, while walking the aisles of Ikea, I found many treasures that I didn’t even know existed. Three of my most cherished possession from Ikea include: a garlic masher, a back pack that fits perfectly under an airplane seat, and a long shoe horn that helps me squeeze into my favorite pair of boots. Near the exit were economical and highly functional blue Ikea bags made from tarp material (which I now use daily for my errands) and piping hot cinnamon rolls.

Unlike what I originally thought, Ikea wasn't about furniture - it was about unexpected inspiration and discovering things that I didn't even know that I needed or wanted.

I wouldn't have understood unless I had gone.

So why is this Ikea story worth telling?

Because Ikea is the best analogy that I have for trying to explain what it is like to raise a child with Down syndrome.

Down syndrome has two parts: 1) the condition and 2) the experience. Just like Ikea furniture - the condition itself has a lot of undesirable features - genetic issues, medical complications, intellectual disabilities, etc. - yes, that's all there.

And "raising awareness" isn't about trying to convince people that Ikea furniture isn't particle board. It is. There are a lot of difficult parts of Down syndrome that make it a hard way of life. I'm not here to say those challenges are great. They aren't.

But I feel that my job in raising awareness is sharing about the second part - the experience.

It is part of your life that is so hard to imagine until you are in it. The gifts are so heartfelt and unexpected, you can't even describe them. And you don’t recognize that you need them until they appear and somehow seem to fit. These unexpected inspirations sometimes change your life path, and you end up finding people, situations, and meaningful endeavors that you never knew existed if it had not been for your child with Down syndrome.

You discover things that you were not looking for like genuine friendships, a sense of community, and renewed spiritual trust. The gifts include a new depth of emotion, a sense of purpose, vulnerability, love, pride, fear, faith and some of the richest parts of the human experience.

I would never have even thought to ask my friend "how are the meatballs and cinnamon rolls at Ikea?" - because who knew there would be meatballs and cinnamon rolls at a furniture store?!?!?!
Likewise, I didn't know to ask my doctor, "what will I learn from raising a child with Down syndrome?"

Friends, I tell you there is unexpected magic and uncountable blessings hidden in that little extra chromosome that my son Reeve has. We celebrate him and all of his friends with Down syndrome because they bring an immeasurable richness to our world.

If I had one wish for the act of “raising awareness,” it wouldn't be that everyone understood the condition of Down syndrome, but rather that more people became genuinely curious about the experience of Down syndrome.

Ikea may not sound ideal based upon “furniture” standards, if the furniture were any other way, the Ikea experience would not exist. The same is true for raising a child with Down syndrome.”

The only people who can truly give you perspective on this are those who have been through it themselves. I would encourage you to join https://www.facebook.com/groups/dsukpositiveaboutdownsyndromegreatexpectations/?ref=share. This is a group for expectant mums in the UK who have a high chance/confirmed diagnosis of a baby with DS.
I have a son with DS. We had a pre birth diagnosis at 31 weeks via amnio. I have a daughter (non DS) and went through 2 miscarriages before conceiving my son. For me, especially having gone through loss, we did not consider termination. He was my child from the moment he was conceived, my responsibility, and I would fight for him no matter what because he was so wanted, but that is my personal choice.
There is a wide spectrum of DS. Yes, some have a lot of health conditions, a 50% chance of a heart condition, but others don't. They have the potential to be as independent and capable as anyone, given the encouragement and support to do so.
We were referred to a fetal cardiologist during pregnancy to check for any heart issues. They couldn't find any, but he had an echo when born to be sure. The flap on the heart that's meant to close when born hadn't closed, but that's a tiny hole and would only stop him from doing deep sea diving in the future. Get a referral to fetal cardiology and have a scan to learn about your baby's heart. That might help you.
My son is prone to colds and respiratory infections due to narrower airways, but I don't really see that as being much different to a child who goes to nursery/school and picks up all the bugs going round.
Children with DS tend to hit developmental milestones later than others. The key is early intervention. You will find that services (eg physio) differ across the country as to their criteria for getting involved. It is a bit of a postcode lottery. You will become their advocate. I would also encourage you to find your local DS group for support. There is an amazingly supportive DS community out there (in person and on facebook) and you would be welcomed with open arms.
Join the DSUK PADS Facebook group. See what people say there. Getting a diagnosis of DS is an emotional rollercoaster. The medical professionals tend to focus on the negatives rather than the positives, and there is a lot of inaccurate information out there based upon a perceived stereotype that is not reflective of reality.
I note you said you've gone through IVF so I would maybe consider what journey you've gone through so far and what your likelihood would be to have a child again. I don't know the specifics of your situation but is this your only chance to have a child?
How would you feel if you went ahead vs not? Which would you regret more?
It is ultimately your decision what you chose to do. I wish you all the best.

Because Ikea is the best analogy that I have for trying to explain what it is like to raise a child with Down syndrome.

John 11:35

I don't know how to link but there are a couple of other poems
One called welcome to Beirut
And another called Amsterdam International ,both much more realistic than, Welcome to Holland .

Agree. Differently Abled is one of the most patronising terms I’ve ever come across.

We tend to say Welcome to Kabul in this house 😁

I was born with spina bifida in the late 1950s and my mum was told the best thing that could happen would be for me to be made comfortable and ‘let nature take it’s course’ because I probably wouldn’t survive to adulthood, would never walk and would have severe learning difficulties. She rejected this approach out of hand and she and my dad dedicated their lives to making sure I had everything I needed to live the best life.

I’m now 67 and although my mobility has taken a hit in recent years, my mobility was vastly improved by different surgeries during childhood and I was mobile enough to attend mainstream schooling and went to uni. I worked full time for most of my career and only in the last years, went part time due to health issues. Sometimes they really don’t know it all.

I don’t think character is overrated. It’s what you need in bucketfuls, along with courage, to face life with a disability.

Side point but I always find the phrase "I wouldn't change them for the world" an interesting one.

It is difficult - I love my DC. So though I wish they didn’t have their disability, if they didn’t they would be a different person so to say you wish they weren’t disabled is a bit like saying you wish they weren’t who they are. I suppose it comes down to being a bit pointless wishing it were any other way because it isn’t.