To be saddened about article discussing baby loss

[ohstarrynight]

I became pregnant in 2019 for the first time and at my 10 week scan to check on some spotting, the sonographer noticed that the nuchal translucency looked a bit high but wouldn't tell us anything further. At our screening scan 2 weeks later, they confirmed that my baby's NT was over 9mm with a large cystic hygroma and booked me in for a CVS 2 days later. It was then confirmed the following week that my baby had a chromosomal abnormality that meant she very likely wouldn't survive to birth and if she did, would lead an incredibly difficult and short life with many surgeries and life-limiting qualities. Sadly we made the decision to welcome her to the world at 16 weeks gestation.

I read a BBC article yesterday about baby loss/terminations (and actually have read several articles with the same theme in recent months) and people in the comments are so horrible to women who have gone through this. Someone actually wrote that women who choose this have taken the easy way out.

It was not the easy way out. I was induced, went through a painful 8 hour labour with contractions and birthed her. I met her. She had a name. It was not easy.

And anyway, even if someone's baby was going to be severely disabled but still survive, isn't there anything to be said for someone being honest about their capability to take care of a baby/child/adult with those qualities? Women who care for their children with disabilities are incredible, however it doesn't mean that women who decide not to are 'playing with eugenics' or 'being selfish' (words taken from comments section). I would much rather parents be honest about this than bring a baby into the world that they can't commit to caring for (emotionally, physically, financially) and who then may suffer with their quality of life. Children with disabilities can lead very full and happy lives but it can take a lot of hard work and sacrifices from parents to ensure that happens.

I know I'm taking this all very personally and know we made the right decision for her and our family, but it's still just very sad. I miss my daughter.

Yanbu.

You took an incredibly brave decision, and it was extremely difficult. Many of the people judging have never been in your shoes.

@TurquoiseLemur just to clarify that he has lived through very minimal prejudice to form his world view. Totally agree many have that view and fully support different views and different cultures sharing their viewpoint.

Been there, OP. Been there, done that, got the ashes, and the grief, and the name of a daughter that I've heard called out to summon someone else's daughter. My own girl will never be in that number, running towards her name ringing across the playground or school yard. No rites of passage. Her name has become the memory of a brief life that will matter to me until the end of mine.
It's too easy for others to pass judgement when they haven't an iota of what it is to walk the walk, make that choice. Fuck 'em. You know the truth. You know the love, OP. And that is what matters. I am unapologetic about the choice we made, completely and utterly. That doesn't mean it was easy or 'right'... it was the choice that took away a life of suffering, but a life that was valued immensely, for a daughter that I never raised but know and love soul-deeply.

Sorry for your loss OP I had a 24 week loss with a three day labour, so I can sympathise with some of what you experienced, though of course we're all different, and our circumstances too. I hope that time is easing the immediate pain for you.

I think it's okay for people who have not experienced baby loss to have an opinion on it. But they should express that opinion without being rude, judgemental or unfeeling. Your particular case is obviously pretty black and white, but there are 'in between' cases, where some people would choose to terminate and some would not. It's okay for people to have opinions on what they think is right in these cases, and it's okay for them to express it, just as it's okay for people to have opinions on a range of things that they haven't necessarily personally experienced. But it should be done sensitively and with kindness. It doesn't sound like that happened in the comments you mention.

I find it's best to avoid reading stuff like this to be honest. You made your choice in good faith and from a place of love, so just accept that many people don't have the capacity or the will to understand it, and avoid reading the rubbish they're writing.

xx

You can guarantee that not a single one of those people commenting would so much as pick up a bit of shopping for their mum, never mind look after a child, never mind look after a child with disabilities.

I have a 13/14 translocation and I've had three miscarriages before I had my kids by IVF. I would 100% have chosen a termination if I'd not miscarried in those first three pregnancies. Doesn't mean I didn't feel a profound sense of loss each time. People who haven't been there shouldn't pass judgement. (And mostly, they don't - it's the absolute scum of the earth that make these comments)

[quote Jent13c]@TurquoiseLemur just to clarify that he has lived through very minimal prejudice to form his world view. Totally agree many have that view and fully support different views and different cultures sharing their viewpoint.[/quote]
I hear what you say about minimal prejudice. He probably hasn't really been on the receiving end.

My experience of "pro-lifers", both women and men, is that they all tend to hold an unpleasant view of women as a group: women don't know their own minds, women are silly, women are spoilt, women need to be told what's best by an outside party, etc. Most of them (not all) try and shore the whole viewpoint up with religious arguments.

As Anycrispsleft says above (sorry, I can't put that in bold), you don't get such people (apart from rare exceptions) actually providing practical or emotional support to people with disabilities or to their families. My son is 23 and I am yet to meet even one self-professed "pro-lifer" who has offered help. Unasked-for "advice", yes. Their very black-and-white view of life, yes. Their prayers, yes. All that is easy. It's very telling that they shout about "the rights and dignity of the disabled" while actually doing, well, f* all.

All that has confirmed me in the view that their arguments aren't really about disability, they are about women and the choices they don't think women should be allowed to make.

[quote pigeonpies]@TurquoiseLemur

I am talking about the predicament the OP was in. Where future disabilities were known. [/quote]
Sure. Just wanted to clarify because parents of disabled children (I'm one) do sometimes get challenged about all this. Some people seem to think all disabilities are the same, that they're all detectable pre-birth, etc etc. . . .and that decision-making in very difficult circumstances is easy and straightforward.

It does happen. There's always someone out there who thinks they know best.

@Crockof

You took your gorgeous daughters suffering and instead carried that suffering for the rest of your life . It was an act borne from love.

The Internet covers the full spectrum of humanity, including those that don't have any, they don't deserve any space in your mind.

I am sorry for your loss.

This!

So terribly sorry for your loss

There are always arseholes stating their opinion about which they know nothing. You did what you thought was the right thing for your baby. I would have done the same. You really need to ignore x

Thank you everyone. I think I just needed to get it off my chest. And yes, I do still feel an element of guilt and I don't think that will ever leave me. TFMR brings about a lot of conflicting emotions.

to all of you who have experienced baby loss as well.

for you OP. I went through the same thing last year and it's one of the most devastating things a person can experience.
When I read the awful comments I just remind myself that those people have the privilege of ignorance xx

OP you have my utmost respect. No one, absolutely no one has the right to judge you for your decision. For what it is worth I believe you did the best and kindest thing. I volunteer for a disabled childrens' charity and the lives some of them and their families have to endure is absolutely heartbreaking. It is not life it is existence.

I wouldn't judge anyone for making that choice ,however many of children with disabilities care for their children as they have no choice ,My son has a chromosome deletion no pre natal test would have picked it up ,and it wasent untill developmental issues became apparent that we were aware there was any issues ,he has severe autism and learning disabilities,non verbal etc,I adore him,but it's not a choice, what I'm trying to say is parents of children with disabilities are not super human ,many of us are just muddling through as best we can

Parents*

People who make those sort of comments never do anything to support parents who choose to continue a pregnancy. It's all about control of other people and control of women mainly.

"I volunteer for a disabled childrens' charity and the lives some of them and their families have to endure is absolutely heartbreaking. It is not life it is existence."

I think people should be careful with comments like this. Who decides what is existence and what is life?

@Spikeyball

Every one has the right to decide what they consider to be a life vs an existence

I personally see severely disabled children with no quality life as an existence that I wouldn't wish on my own children. Or if I ended up in a similar state myself I wouldn't want to carry on living.

But their parents may feel differently. It's an opinion not a fact

Many people will try to present themselves as perfect online. It's the same reason you'll get nasty comments on articles about tragic events, crowing about how they'd never let such a thing happen, they would instantly know the right thing to do, they'd never let themselves become a victim... So much easier to do "the right thing" when you're not actually living through that experience.

So sorry for your loss, op. You obviously made a measured decision that put the needs and quality of life of your baby first, and nobody should fault you for that. You made your decision with love

You make your decision based on the information available to you at the time.

Difficult and upsetting decisions

But there is nothing guaranteed in life...some conditions are not detected before birth... a "healthy " child can become disabled or die too. Parents deal with the information they have . And decidexwhat to do.

Once baby is born some decide to give up the child if issues. Also a valid decision.
Choosing to carry on is not "heroic" it s just a decision to keep your child and do what you can.

It is Also a valid decision to have baby knowing it will be disabled. Sometimes you don't know extent of disabilities due to wide range of outcomes (eg some syndromes). Sometimes is clearer eg limited life a definite.

Your decision is the right one for you.

And that is all that matters.

[quote pigeonpies]@Spikeyball

Every one has the right to decide what they consider to be a life vs an existence

I personally see severely disabled children with no quality life as an existence that I wouldn't wish on my own children. Or if I ended up in a similar state myself I wouldn't want to carry on living.

But their parents may feel differently. It's an opinion not a fact
[/quote]
An opinion indeed....unless you caring for them you may not know if and how they get enjoyment out of life and what they love.

I personally know people with severe disabilities who are supported to have good life. One enjoys sailing for example laughs znd smiles .....

Could also say I personally know of people physically healthy with severe hidden disabilities who seem to find it hard to enjoy their lives. And just "exist " ..no quality of life.....Again it s an opinion. But looks can be deceiving...

But to reiterate
Your decision is the right one for you.

And that is all that matters.

Most of the people making such comments wouldn't be able to cope with a single day of looking after a disabled child.

@Spikeyball

"I volunteer for a disabled childrens' charity and the lives some of them and their families have to endure is absolutely heartbreaking. It is not life it is existence."

I think people should be careful with comments like this. Who decides what is existence and what is life?

For some people with disabilities, it can hardly be dignified with the word "life." That's not to say that those people should not be looked after properly as befits their needs. And the lives of their families, too.

Society is very muddled about this. Eugenics is generally seen as a bad thing. (And I feel we do have to be very, very careful when talking about disability.) But, simultaneously, support from the state for people with severely disabled children is abysmal. Carer's Allowance is £67. Respite and other provision is very patchy and has to be constantly battled for. (I know. I'm in that situation myself, and it has gone on for years.) It has always been poor. Since the pandemic struck, families like ours have had very little support at all.

Unfortunately, there are too many people who are ready to shout about the evil of eugenics who themselves don't/won't lift a finger to help.

@OnlyFoolsnMothers

Wanker comments by no doubt wanker men! Ignore as their stupidity isn’t worth registering!

I’m so sorry for your loss OP- I love my children and who knows what the future holds, but I know if I had the news you had when you had it, I would have done the same thing.

Wanker men definitely do seem to predominate on those threads. But there are wanker women too who can be just as unkind and just as judgemental.

I hope you feel better op. Don’t read the comments section on the BBC/DM etc it’s always full of bastards talking out of their arses.
Reasonable people would be more understanding.