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.

I had a TFMR at 21 weeks last year. My DH and I decided that we would rather go through the pain and upset than have our darling girl ever feel a minute of pain in her life, and whilst it was undoubtedly the absolute worst thing I have ever had to do, I couldn't bear knowing that she would have suffered if I could have avoided it.

Signing the paperwork was the single worst moment of my life, but I know that with the horrific issues that she had, if she'd even made it through birth, every second of her little life would have been a struggle and I couldn't have done that to her.

People who haven't had to make that choice have no idea what it's like, and I hope they never have to. A part of me died with her that day, and I'll never be the same person I was, but I stand by my decision. You're a very very brave mum, and ignore the idiots and stay strong x

I would have done exactly the same thing.

You saw the future that lay ahead of her - a short life where she would know only the downsides of medical care and none of the upsides. Even if she had survived, you would likely have sacrificed the rest of your family's wellbeing (emotional, financial, even physical health) for the sake of a child who just doesn't have any real quality of life and isn't really benefiting from everything you do no matter how hard you try.

There are no winners here, none at all, but you did the best you possibly could and I would have done the same.

You took the pain so she didn’t have to. Thanks to you, your daughter never knew pain.

Some people are just nasty. Pity them.

Personally, I think you did the best for your daughter. You took away the pain and suffering and took that on yourself. Definitely the best thing you could do. A pure act of love.

Don't read the comments in future. It's not worth the upset. Especially from stupid people that sit hiding behind their laptops.

I’m so sorry for all you’ve been through. It’s awful to have to go through that trauma and sadness and then face judgement from some members of society on top of it. As others have said please don’t take their comments to heart, they have no idea of the complexities of situations like this.

I had a compassionate induction at 21+4 after a diagnosis of severe spina bifida and very poor prognosis. The last 7 months since my son was born have been the most horrific of my life.

I had to make decisions that will haunt me for the rest of my life. Make choices to spare my child a short life of suffering, but take on that suffering myself. I was induced and gave birth, to a beautiful 375g boy, who lived for a precious hour and a half. And then walk away from him. I have his hand and footprints, and a blanket and a hat that he wore.

I had to explain death to my 4 year old and explain why his little brother wasn't coming home. I had to leave my tiny baby in a mortuary, choose a casket, plan a funeral, leave him in a crematorium, then bring his ashes home. All the physical things that happen after birth happened, my milk came in, I bled, the after pains. The 3 day hormonal crash? Imagine that with no baby.

From the shock of the diagnosis, to birth in under a week. And then the dawning, dark realisation of living a life alongside grief, as a bereaved mother, but one where you don't know how people will react if you are your type of loss. The guilt. I have PTSD, I am utterly heartbroken, I blame myself. Nobody who has an ounce of compass would ever condemn a woman who had a TFMR.

I am sorry for you loss, and all the other TFMR mums here xx

If you share*

I was given several different prognoses throughout my pregnancy - hope kept us struggling on till 35 weeks when we were told to pray for a miracle... I had her at 39 weeks and after a night in NICU she died in my arms.

Anyone who has not been in your (or my) shoes can really not fully understand and those who have been there would never judge. People who take pot shots from behind a keyboard are the lowest of the low. Sending hugs.

Sadly there will always be people with different opinions, and often they are said in ugly ways. It doesn't mean they are right and you are wrong though, and vice versa. People do what they need to, in the circumstances they are presented in. It is very easy to say you'd do something if you've never been through it, and it's also easy to be bias if you have (to help you feel your decision was the best one).

You know in your heart what you did was right for your child and for your family. Other people's opinions won't change that. I'm sorry for your loss x

So sorry for the loss of your daughter, fortunately I have not been in the same position but I believe I would have made exactly the same decision.

I sometimes think that the medical world is so advanced its detrimental At times.

@worktrip

You will always get these nasty pro lifers reviling women who make choices that are right for them. Ignore it.

Sadly, yes.

I have a son who has disabilities. I made the mistake once on a forum of trying to explain the nuances of this situation. (Basically, I love my son to bits but am sad that he was born with the problems that he has. And that the impact of disability on families is huge.)

Got a wet-behind-the-ears young man telling me I was a fascist. His own experience? He had once been a volunteer for a week at a project for disabled children.

These people haven't a clue and don't intend to get a clue any time soon. I'm sorry, OP, you've been upset by them. You made a difficult decision in a desperately sad situation. I'm so sorry for the loss of your baby.

I was exactly in the same situation as you. NT was 11mm. We decided to refuse all further tests and let nature take its course. Our little boy's heart stopped beating and I gave birth to him at 19 weeks. His name was Joseph. He would be 3. I miss him.

If the comments you have read affect you, it means a small part of you is feeling guilty about your decision. Don't. You made the best decision for you and your child.

Sorry for your loss.

If I was in the same predicament I would have 100% done the same. I actually think it's more selfish to carry on knowing full well the pain and suffering your child would have gone through, and I know that may be an un-popular opinion.

Like others said, you took the burden from her and will carry it for the rest of your life, she is pain free. Choosing to put a child through severe disability although may feel like it comes from a place of love, is self centred and focusses on parents being able to keep their children at whatever cost. You made a painful and incredibly brave decision for your daughter. It's what parents do.

I would avoid reading these kinds of articles.

Be at peace x

I had to leave my tiny baby in a mortuary, choose a casket, plan a funeral, leave him in a crematorium, then bring his ashes home
That resonates so much. I feel as if all I did after my son was born was leave him places.
That's why I had to have the coffin commited at his funeral. I just couldn't bear to walk away from him again, he had to leave me for once.
They returned his ashes on his due date.

So last week my brother had this argument with me about TMFR. He's in his 30s, unemployed and lived with my parents, white, never had a girlfriend or a child. He was stating with absolute fact that it was ridiculous that cleft palate was included on the list of conditions. Apparently his friend had a child with a cleft palate and its a 'simple operation' now. I reminded him that some children are born without any roof on their mouth and may suffer pretty severe hearing, nutrition and speech issues as a result.

I think its important to have a conversation around it to be honest, otherwise some sheltered people honestly never consider it and blindly take the pro life view because that's what their parents believe. I also do believe that there should be people with different views and values and beliefs on both sides. I cannot even imagine what you have had to go through. I hope you are getting the support you need.

@Jent13c

So last week my brother had this argument with me about TMFR. He's in his 30s, unemployed and lived with my parents, white, never had a girlfriend or a child. He was stating with absolute fact that it was ridiculous that cleft palate was included on the list of conditions. Apparently his friend had a child with a cleft palate and its a 'simple operation' now. I reminded him that some children are born without any roof on their mouth and may suffer pretty severe hearing, nutrition and speech issues as a result.

I think its important to have a conversation around it to be honest, otherwise some sheltered people honestly never consider it and blindly take the pro life view because that's what their parents believe. I also do believe that there should be people with different views and values and beliefs on both sides. I cannot even imagine what you have had to go through. I hope you are getting the support you need.

You need to remind your brother that it's never a decision that will be his, so he should just stop worrying about it.

@pigeonpies

Sorry for your loss.

If I was in the same predicament I would have 100% done the same. I actually think it's more selfish to carry on knowing full well the pain and suffering your child would have gone through, and I know that may be an un-popular opinion.

Like others said, you took the burden from her and will carry it for the rest of your life, she is pain free. Choosing to put a child through severe disability although may feel like it comes from a place of love, is self centred and focusses on parents being able to keep their children at whatever cost. You made a painful and incredibly brave decision for your daughter. It's what parents do.

I would avoid reading these kinds of articles.

Be at peace x

Please bear in mind that lots of disabilities are not detectable pre-natally. Many parents don't get to make a choice either way.

When the disability is deemed, prenatally, to be fatal (i.e. leading to a very short and/or painful life) it does seem odd that some parents go ahead. They are hoping against hope, I suppose. It's only human.

@TurquoiseLemur

I am talking about the predicament the OP was in. Where future disabilities were known.

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.

What @Crockof said

It’s so easy for people to write nasty comments online with no repercussions. What a difficult time for you, and the strength it must have taken to make those decisions.

@Jent13c

So last week my brother had this argument with me about TMFR. He's in his 30s, unemployed and lived with my parents, white, never had a girlfriend or a child. He was stating with absolute fact that it was ridiculous that cleft palate was included on the list of conditions. Apparently his friend had a child with a cleft palate and its a 'simple operation' now. I reminded him that some children are born without any roof on their mouth and may suffer pretty severe hearing, nutrition and speech issues as a result.

I think its important to have a conversation around it to be honest, otherwise some sheltered people honestly never consider it and blindly take the pro life view because that's what their parents believe. I also do believe that there should be people with different views and values and beliefs on both sides. I cannot even imagine what you have had to go through. I hope you are getting the support you need.

I get that your brother has limited life experience and has never had dependants. But why is the fact that he is white got anything to do with this? Plenty of black people would argue the same. (Which I disagree with, fwiw. Like you say, cleft palate can be tied up with all sorts of serious issues.)

Sorry for your loss OP.

No judgment from me. I know of two families with severely disabled DC and it has turned their worlds upside down in every possible way. People who make such ignorant and short sighted comments probably have very little understanding of what a baby being born severely disabled means for that child or the parents and any siblings. Ignore them

Is there a link so we could all flood the messages with support for women and families such as yourself?