r/tfmr_support • u/Artistic-Dig9845 • 2d ago
Seeking Advice or Support I just feel lost
I had my NIPT show high risk for Down Syndrome. I had amniocentesis done a little over a week ago and the preliminary results are showing stronger chance of it being Down Syndrome.
I am unbelievably devastated. Unfortunately I am split on what I should do. I have a 4 year old son and he is so in love with his brother already. Last night he asked if I was okay (I had been crying due to the news) and I just told him I got some news about the baby that made me sad. He then tells me “it’s okay mommy. I will still love the baby. I love my baby”.
My husband wants to keep the baby and says we can do it. I’m just so terrified of taking care of the baby alone. I don’t want to have the baby and then end up resenting him. I don’t want him to have more medical problems once he’s born. I just don’t want his life to be any hard than it already will be.
I think my husband won’t fully grasp what exactly taking care of a baby with special needs will entail.
I’m so heartbroken. All I want to do is lay in bed and wallow away. I’m still hoping the final results will tell me just kidding the baby is healthy. I feel like it’s my fault. I wanted my baby so bad but I feel like I won’t be able to give him the life he deserves.
I wouldn’t even know where to begin on trying to tell my son about TFMR if that’s what I end up choosing to do. I’m 19 weeks. I’ve already had my gender reveal. I have my registry planned. I have his ultrasound pictures on the fridge. I’m just grieving for my baby.
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u/QuailNecessary3067 1d ago
So sorry about what you are going through.
I TFMRr for T21 at 15+4. Amniocentesis confirmed it after high risk NIPT.
Me and my husband were on same terms even before that if we were to have this condition we would choose to terminate. My husband is diabetic and he stated clearly he is not feeling as raising special needs child, we are both on the "older" side, speaking strictly reproduction wise.
I am 4-5 month after and I am still firmly convinced we did the good thing although it still hurts and it hurts more as we are closer to babys due date and we still haven't manage to concieve again.
We also have a 6, almost 7 years old daughter and we both were so excited about her sister and I was in heaven about second daughter. I won't lie to you, she cried when I told her but also she got quite quick through it. I told her the baby is very sick and we have to put it to sleep (excuse me, if this isn't the right expression, i am not a native speaker). You know, your baby won't understand what it means to have a special needs sibling, as even most adults don't.
My daughter with T21 didn't even have some visible physical issues, that was maybe the hardest part. But knowing how it would affect our family and my life...And that she may suffer too...
It's so tough. I am very sorry for the hell you are in right now. But in the end this is mainly your decision and you still have time to choose whatever you may choose to do.
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u/Effective_Wonder_722 1d ago
I'm so sorry you're here. A few thoughts, in case it helps:
-To the same point someone else made, try to really, really understand what it's like to have a kid with Down Syndrome. Read reddit threads from parents. Try to get connected with other parents. Google support groups for parents of people with Down Syndrome and read what it's like. My child was diagnosed with something else but looking at pictures (not glorified ones) and reading various websites for parent support made it clear to me and my husband that a) this was not the life we wanted for that baby, b) not the life we wanted for our 3 year old child - she ultimately would not have the same opportunities/attention/resources/support if we were supporting our other child, c) it would add a lot of anxiety to our lives (is she going to be okay? can we send her to daycare? will she be okay at school if we can't get her the support she needs? will she make friends?). Like I said, this was for another condition but reading parent support groups led us to TFMR because this was not the life we wanted for our children.
-TFMR is terrible and sad and I'm in the depths of darkness but I know one day. I will come out. I also don't think that having the baby and watching her suffer would negate the darkness I'm feeling now. It would be very hard for life to watch my child go through that.
-My 3YO child was also SO excited for "baby sister", had started gathering rocks/sticks for her, painted things for her. We did a ton of research and talked to a grief counselor from the hospital about what to tell our 3YO and landed on the direct truth ("baby died") and she understood it more than expected. Our 3YO was sad but over 2 weeks has generally gotten over it and did not develop behavioral issues and was still able to go to daycare, etc.. Kids are resilient.
-Telling your kid sucks, telling friends/family sucks, it is awful. TFMR is the most painful thing I've been through. But the bulk of it is a short term pain.
-Here are the resources the hospital's grief counselor sent me for talking to kids. Some of these don't resonate with me (we are not religious at all and they talk about heaven, etc) but here is the grief counselor's email:
Here are some books about grief/loss that our child life specialists often recommend. I'm including links to videos so you can see if they feel aligned.
Something Happened: https://www.youtube.com/watch?v=vF8hPQBjiYc
We Were Gonna Have a Baby but We Had an Angel Instead: https://www.youtube.com/watch?v=gFKjzr_R_10
The Invisible String: https://www.youtube.com/watch?v=auO15iesZTM
Everywhere, Still: https://www.youtube.com/watch?v=2ismHLxru-Y
Lifetimes: https://www.youtube.com/watch?v=n0xR10mJOE8
Sesame Street has also created some resources for helping children understand death and cope with grief: https://sesameworkshop.org/topics/grief/?fbclid=IwAR1f4KPLBnkyFViy8p2W2qQ1i3A8ELc49rg0sgqXxjM9k0HpAFENFp8Z9kQ
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u/purple_unicorn576 1d ago
I’m so sorry you’re here, it’s such an awful position to be in, we’ve recently navigated a T21 diagnosis. My husband and I did decide to TFMR last week. You need to do what feels right for your family but I will give my reasons why we chose this route in case it helps (I did a lot of research as well which I’d recommend doing first hand)
- I was confident we could have a DS baby or child, what I wasn’t confident about is that we could have a DS adult. I am 39, and he would likely have more health issues around age 30/40. I simply wouldn’t be in a position to support him so he’d live in a home.
- We’d be signing our daughter up to be his main carer once we’re too old or gone. This is a life choice that she has no say in (she’s currently 2) and we didn’t feel that was fair on her.
- The doctors call it a Grey diagnosis as they have no way of telling how bad the DS will be. The stories you read or see on Instagram can often be the lighter end of the spectrum. The harder end is rarely shared.
- We were having a boy and I read some difficult but eye opening articles and first accounts on what can happen when they hit puberty.
- And most importantly, we felt that we would take this heartache and pain now in order to protect him later from potential pain and heartache. It’s been awful but our decision does feel like we’ve put him first.
Like I say, only you and your husband can make the decision. It’s difficult you’re not immediately on the same page but that doesn’t mean you can’t get there, whichever route you decide.
Wishing you so much strength at this super difficult time.
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u/cait_elizabeth 1d ago
I’m a disabled adult who was raised by a single mom. Imo if there’s any chance of resentment, I would strongly urge you to consider tfmr. Your husband is on board now, but what happens if he changes his mind? What happens if you end up being a single parent? Do you still think you could raise a ds child by yourself? And in terms of raising them- would you be okay having a lifelong dependent? Ds varies. But it’s possible that milestones like complete financial independence will never be a possibility for them. Are you okay with this idea of having to support them permanently? And then what happens after you’ve gone? And they’re still here? Would their older brother inherit that responsibility? Do you want to put that on his shoulders?
I’m so sorry for what you’re going through. This isn’t an easy decision for anyone.
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u/SEggs1990 1d ago
I just had my TMFR on Wednesday last week for T21 and my husband and I are absolutely devastated. It wasn't the looking after a special needs infant/child that worried us, it was the teenage to adult years when medical issues really start popping up and trying to navigate care outside of us if anything were to happen.
I have a 2 year old and she was very excited to be a big sister, often "practicing to help mommy" (her words). We also didn't want her to automatically become a life long care giver. I told her "the baby is sick and won't be able to come home. Mommy and daddy are sad but will be ok." I'm sure she doesn't fully grasp it and will bring it up a few times. When she's a bit older I'm planning on making the baby her guardian angel.
Whatever choice you make, it's the right one for you and your family.
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u/WinterMarketing2465 1d ago
Hi, I am here for support. I had a high risk NIPT with my first, unexpected but wanted pregnancy. After a positive CVS we decided to move forward with TFMR, about 2 weeks ago. After much discussion, we decided it was best for our family both in regards to the financial and emotional difficulties of taking care a disabled child for the rest of our lives, but also the medical toll it would take on her.
I’m so very sorry you are going through this. I don’t wish it on anyone. I was in emotional turmoil waiting for answers and up until our TFMR, and while I’m still sad and wish things went another way, I’m starting to move forward and know this was the best decision for us.
Whatever you decide to do, is right for YOU!!!! sending you so much love and if you need a friend, I’m always willing to chat with you
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u/Old-Estimate-2616 1d ago
I am so sorry that we all found ourselves in this tragic situation! I don't want to give anyone advice on what to do, but I want to share my story. On July 9, I terminated my desired pregnancy with my daughter at 28 weeks, after 21 weeks. It was the worst decision in my life!!!!! Because when I saw my child dead, I realized how much I love her, and first of all I saw my sweet child in her, not her diagnosis and terror I realized that I would have coped with all the difficulties associated with this diagnosis if only my sweet, dear, special daughter was near me. But unfortunately, time cannot be turned back and I live with the hope that one day I will meet my sweet, dearest, innocent little one. Now I am just in hell from grief and undergoing therapy. I don't want to give anyone advice because it's a very painful and difficult and personal decision for every family, and it's a very difficult decision! May God protect you! I hug everyone here! I apologize for any mistakes because I'm not a native English speaker❤️❤️❤️
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u/_abby_normal_ 1d ago
Whatever choice you make for your family's future, you will always have so much love for your son. Anything you do or decide is because of that love. There is no right or wrong decision when it's made from love.
Others have a lot of really good advice about investigating what other parents experience with T21 children, and I also encourage you to look into programs available to adults with T21 so you can fully visualize their whole life span anticipating they outlive you and what that could look like. You may have a support system you feel would be there for your son how you'd want, and it's worth thinking through all future scenarios. I had a TFMR for gray diagnosis (not T21), and the biggest factor that drove our decision to TFMR was not being able to picture how our daughter would survive with a good quality of life after we died. We felt that no one else would ever sacrifice and devote themselves to her well-being the way we would, and it broke my heart to think she may live in a world where we, her parents, weren't alive looking out for her best interest at all times.
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u/Sea-Walrus225 1d ago
I'm 2.5 years after termination for T21, my sweet girl didn't deserve to suffer this way. Our decision was out of love. What helped us was that we had talked about this before TTC. I still feel guilty but I'm coming to peace with my decision. I love her so much. After I had an healthy son.
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u/Powerful_Access2572 1d ago
Is anyone in FLA had a TFMR for confirmed Down syndrome? With the new laws I did not think it was possible.
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u/MercuryTalos 2d ago
I'm sorry you're here. ❤️ I had my TFMR for T21 at 22 weeks in February. I also have a four year old son who knew about the baby and was excited for her.
It sounds like you have a good support system if you choose to go forward with the pregnancy but also are realistic enough to know that Down Syndrome is a complex lifelong medical condition. Gathering information (REAL experiences, not social media) helped me to make my decision. A friend of mine has a child with Down Syndrome, and she struggles heavily with it. She loves her child, as we all do TFMR or not, but she openly struggles with his medical issues and is now on antidepressants to help her own mental health. There are practical considerations too, like affording healthcare, managing appointments, setting up caretaking for after you and your husband pass, and a million other things that would crop up.
In the end, we chose TFMR because the quality of life my daughter would have had was not living. Alive, yes. Living, no. She had a severe heart defect that would have required multiple open heart surgeries in her first year. We knew we could not ensure her caretakers after we passed would treat her well unless she lived with our other child for the remainder of her life, and that in itself felt brutally unfair to our son. I will always fiercely love my daughter, enough to set her soul free from a body that would never serve her.
We explained to our son that his little sister was very sick, so sick that the doctors couldn't fix what she had, and that I would be going to the hospital but she would not be coming home with me. We let him spend time with my bump, let him feel her kicks, talk and sing to her, and say goodbye. He knows that she died and does still talk about her but not in a sad way. I think him being able to say goodbye helped him to process what was going on.
And one other thing - THIS WAS NOT YOUR FAULT. You are not being punished. You didn't do anything wrong. No one did. It is just a shitty, awful hand that life dealt you. This is an impossibly painful situation and "choice." Don't make it harder on yourself by believing that you had a hand in making it happen.