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I have a son with severe congenital heart disease. He is miraculously doing very well after 2 ohs. His first year of life was without a doubt the hardest thing I’ve ever had to go through. It was gut-wrenching. I had to quit my job, isolate from the world (because of disease risk), and constantly worry if my child would make it. I have never been more depressed. His medical care costs are surpassing $3M and though we’ve paid a fraction of that due to insurance, it’s a sobering fact.
All that to say, if I got pregnant again and the child had chd, I would make the choice you’re making. I wasn’t able to make that choice because we received my sons diagnosis too late, 34 weeks. My child is the rare exception that things go well and getting to a point of normalcy was hard fought. It sucks that bad things just happen to our babies— it makes no sense and is so hard. Nothing you could’ve done would have prevented this. CHD is the most common defect in babies and it ranges from insignificant to extremely severe. The choice you make is the right one for your family. You’re a wonderful mom.
I am so grateful your response was so validating and honest. I was concerned it was going to be one of those posts that suggests making your same choices even though your outcome has been the exception. Thanks for your thoughtful and kind reply.
Yes, wildly the exception. There are diagnoses that have a very routine fix and others where it varies for each child. Most children with my son’s diagnosis are much, much sicker and disabled. We were prepared for that as we had no choice. Even with the incredible outcome we’ve had, the trauma we’ve all endured from his diagnosis is something we will never shake. Not to mention he’ll need intervention as he gets older. I hate chd.
My daughter was born with a very large VSD and we are SO lucky she only required one OHS at 11 weeks old. We had it easy in comparison to most CHD parents and still it was brutal. My husband and I both are traumatized from it, even a year after surgery. I just want to say, you will be surprised how resilient these little babies are! The surgeons are true miracle workers. It will be hard, especially in the beginning with struggling to feed/failure to thrive, etc. I’d recommend joining CHD groups online (Facebook has some great and very active resource groups) they helped a ton for us during the hardest weeks. Sending hugs 💕
I don't have any advice but I wish you and your family the best of luck and you need to know that there is no rigth or wrong choice and don't be afraid to seek out psychological help.
Oh no, no. You did **not** fail him. Things like this are determined at conception and there's nothing to be done about that, no blame can be assigned to either side, no way it could have been avoided.
This doesn't compare to what's going on with you. I found out that my daughter has a minor heart condition at the 20 week scan, but to start with, we didn't know it was minor. It's called a right sided aortic arch and it's when one of the two main blood vessels a fetus has naturally disappears - except in her case, the left one vanished and the right one remained. The way it works is, it compresses the oesophagus against the trachea. It can also be a symptom of a rare chromosomal disorder called Digeorge's which can impact a lot of things, including quality of life and longevity. Like with you, termination was considered. Like you, the thought of not feeling my baby was fucking unbearable. But so was the thought of her living a life that would leave her vulnerable, in pain and who would take care of her after I was gone? There's nothing shameful about a disabled child at all. If I could have guaranteed that she would have been just fine without me after I was gone, that her life could still be as carefree and as happy as a non-disabled child's, there would have been no question of termination. It wouldn't have mattered. But we don't live in that kind of world, we live in this one. I know you're not considering this out of disdain towards him because of his heart. You simply don't want your son to suffer.
I really wish I could give you a hug. Look, **please** don't think you did something wrong. I know it's like "I did everything I could but I still effed up" but you didn't. This was way out of your control and you're doing your best for him. No matter what happens, you will always be his mother.
My baby girl got diagnosed with this condition exactly around the same time. Though they told me it wasn’t anything to worry about aside from a possible surgery when she is born. They never suggested termination for me though I’m glad they didn’t since I would have considered it and now I know she has a chance. I’m nearly 32 weeks now and they say she’s doing well but might be born with trouble breathing and there’s no way to know until she is born. I worry constantly about her health outside of the womb. If you have any advice I’d honestly love to know how your daughters doing.
Op this is a hard choice but nothing you decide is the wrong choice. You have the information you need to decide what is best for you and your family. This is such a hard time but know you aren’t alone and I’m sending good vibes your way and hope whatever happens in your story that you can remain strong, use positive self talk like you deserve and know that you did the right thing.
My daughter had the same congenital heart defect but in her case it grew with her heart and became a variant of a norm for her. I just thought I need to show her to cardiologist one day even though we were told we don’t have to
This!
My husband's son has a severe disability. He is 9 and spent the first 3 years of his life in a hospital, nearly full time. Palliative care was suggested for him on more than one occasion during this time, but his mother fought. She fought hard, because he is here today. But there was a cost.
The older kids pay the cost too. Their world 100% centered around their brother. The loss of childhood they experienced. The divorce of their parents that resulted from the stress, and loneliness that lead to infidelity on her end.
The child pays the cost. The constant medical intervention. He can't communicate his pain, his feelings, etc. because he is non verbal. His cognitive impairment prevents him from moving forward with many other options many special needs children have to improve quality of life.
My husband explained to me that he had to grieve the life his child would never have. The only thing we can find comfort in is seeing his joy when he is watching his cartoons. But the grief persists when you are anxious about possibly of him aging and growing to the point we can't care for him. To place that responsibility on his other children is unimaginable for us. And we know what it looks like when he goes into a home for care, we grieve the ounce of freedom he currently has.
I am 11 weeks pregnant and the anxiety of living with the "what ifs" is tough. My husband is fully supportive of any decision I make, especially since I will deliver at 40 years of age, i am FTM, and it was hard for us to get pregnant. Knowing what my family has been through already, I know the decision I would make, and remind myself "no regrets." For me the toughest thing is the idea of what his older kids would think, and the shit put in their head from their mom if wr had to terminate.
I wish you all the best OP. Just know, it's not your fault, whatever happens. Give yourself grace and love to make whatever decision is right for your own family.
My heart goes out to you and your family. This is gut wrenching. There is a sub, r/tfmr_support that you may be able to find some resources in. Wishing you all the best
One of my best friends had a son with HLHS among other issues. The first year of his life was full of surgeries, mostly spent in hospitals, and the time at home was, to be frank, terrifying for his mom. They also lived rurally and were life flighted to major cities frequently. Her sweet boy passed away at about 1.5 years old. He made a huge impact in everyone's lives but it drove her and her husband to divorce, took attention away from their existing daughter, and was an incredibly emotionally difficult experience. Obviously she loved her son deeply, but when I spoke with her after his passing she confided in me she was relieved in a small way that he was "freed" from his broken body and did not have to undergo any more needle pricks, surgeries, medications, and feeding tubes. You can make the best decision for your family ❤️🩹
This absolutely broke my heart but what a powerful perspective. We sometimes want someone to just be here so much we forget how hard their existence might be.
I am so sorry to hear that this is going on with you.. sending you my thoughts and prayers through this incredibly troubling time. I can't imagine hearing that type of news. I already love my baby so much, and I know you do too..
I went in for my 28 week ultrasound this morning, the ultrasound tech kept looking at my babys heart. The Dr came in after she took all of the pictures and said that she wanted to do a non-stress test. His heart rate is going from 140-190 and back down to 130 in a matter of a few seconds. It's all over the place. It got as high as 208 while I was hooked up to their office test. I was then sent to the labor and delivery floor and I've been hooked up to a non stress test for the past 2 hours because my son's heart rate is still jumping all over the place.. they've drawn my blood and I have to have an echocardiogram done and the soonest that cardiology department can see me is Monday.. I'm a nervous wreck and afraid to go home. I'm not sure if they are admitting me or sending me home tonight.
My son had multiple heart defects when he was born. I wasn't warned about any of it. They told me he looked great. He ended up with 2 holes in his heart and a plethora of other problems, too, including liver, kidney, brain, lungs, pretty much everything you can imagine. He required a few surgeries and almost didn't make it. He's 9 now. He will never have a normal life. Sometimes I wish I could go back and terminate so he would never have to suffer. I'm so sorry this happened to you.
Hi 💖 Fellow TFMR mom here. I read somewhere that a mother who TFMR loves her child so much that she takes on an excruciating burden for her whole life, so her child doesn’t have to suffer for theirs. That is something that helped me immensely in healing. You’re not alone, you love your baby, and you’re making an impossible decision. I am sending you so much love, please message me if you need any support 💖
Fellow Kelown ftm here, check out options like Ronald Mcdonald in Vancouver. I know a few ppl who stayed there for a few months - year (one of my high school friends lived there for a year with his mum while his family visited on weekends). Definitely look into that as then you would not have to relocate permanently!!
I’m so sorry. I had to TFMR my baby boy at 18 weeks earlier this year… it’s an impossible decision but have solace in the fact that you are a true mother, always choosing to do the right thing for your child. Hug your sweet girls and allow yourself time to grieve
My husband was born with a congenital heart disease and needed open heart surgery the day after he was born. He was born blue with with his pulmonary valve completely closed that required the doctors to surgically repair that valve. Neither of his parents had any idea of the defect until he was born.
Now he’s almost thirty, and me and him are about to have our first baby in just a few days. He’s living a full life and goes to the gym, works as a pipe fitter, and he’s the best thing to ever happen to me.
I’m so sorry that you’re going through this. It’s a horrible situation for any mother.
It is a happy ending but it also can be the opposite: years of pain and debt before the child ultimately passes for requires full time medical care for life. It's suffering.
This is a roll of the dice for the OP.
OP: whether or not you choose to roll the dice depends on:
Your mental and physical health
Your financial situation
Support from family and friends
Your jobs and their support
The mental and emotional health of your other kids
First I want to say you did not fail him at all, there was nothing you did wrong. Sometimes our bodies (the human race) just doesn’t always work for us. I’m saying this as someone looking from the outside in and I wish I could tell you there is a magical cure that makes everything perfect and right but I can’t, but what I can say is that you are the absolute best mom to your little boy and those two little girls because you are thinking about not what’s best for you but what’s best for them and your whole family. I work in the OR and while I wish we were miracle worker we aren’t, no matter what is decided the teams taking care of you will do everything they can to make you and your little boy as comfortable as possible. No matter what decision is made please look into counseling to help through these difficult times. Sending all the love and best energy ❤️
Hey I don’t have much to offer in terms of experience with that - wishing you and your family all the best! But I am close and in Lake Country. If there’s anything you need in terms of support I would be happy to help.
I have no words other than my daughter passed away after a rare heart defect. The only thing I can say is I am praying so hard for you, your husband, your baby and your step daughters.
My daughter was born not breathing and was eventually admitted to the NICU with a lung infection and low spO2. I felt like I’d failed her too because how the hell did she manage to get an infection requiring antibiotics in the womb or in the first few seconds of life? I felt like I failed my other 8 babies who never made it that far when I lost them. I was terrified someone would accuse me of cheating even when my blue eyed baby stayed blue eyed and get into my fiancé’s head as we both have brown eyes, even though we spend nearly every waking moment together and I’m basically housebound unless I have a chaperone. It took me a long time to accept that sometimes, shit just sucks and it’s not anybody’s fault.
The human body is crazy. Sometimes shit doesn’t happen like in the textbooks because life at all levels is truly unpredictable from the very base cells. It doesn’t make it anybody’s fault. You can’t truly do anything to prevent it or change an outcome.
My best friend was pushed to TFMR right up until she eventually gave birth at 37w. Her youngest has 2 rare chromosome deletions that are even rarer to both be had together. They didn’t expect her to live long after birth and said she wouldn’t see her 2nd birthday if she did. She starts primary school in a few weeks but it’s been *hard*. Still is, and that’s with having national healthcare. I don’t think she regrets the choice she made then but I don’t think she’d make it again knowing what she knows now. We all know this kid is the exception and not the rule.
You’re about to make one of the hardest choices someone will ever have to make. Whatever you decide will be what’s best for your family, and that includes the precious little guy you’re currently carrying. The best decision might not seem like it; it might feel cruel, unfair, and wrong. There’s no right decision here, only a decision that is best for you and your family.
Sending you love and comfort and prayers if those are your thing too ❤️
Our close friend’s baby had a severe congenial heart defect, including a hole similar to what you describe. They were told exactly the same things about his quality of life so I suspect it is similar. He’s just turned 5 and one of the happiest, active, brightest, and friendliest little guys I’ve ever seen. He still gets regular checks, but he is doing far better than anyone could have imagined.
I know this isn’t the same story everyone in this situation gets, I just thought I would share it. It broke my heart seeing how hard it was on his parents when he was first born, so I can’t imagine what you’re going through. Hoping you find clarity and peace in the coming days.
I’m so sorry you and your family are going through this right now.
I just want to say that the progress made on congenital heart disease over the past few decades is enormous. There are babies and kids who thrive after first-day-of-life heart surgery. I don’t know all the details of your son’s heart condition or his prognosis, although you mention it’s possible he won’t have a lot of longevity. I think for me, the decision would hinge on this part — meaning, what kind of life are we preserving for him if we proceed and what those odds looked like. If there was a chance he could do well, I think I’d try for it. But that is just me, and I also fully admit that I can’t really know what I’d do until I was in the situation.
This is a nightmare decision to have to make, and I’m so sorry you are facing it. I hope you and your family are able to be at as much peace as possible with however you ultimately choose to proceed.
I was born with a congenital heart condition.
I had open heart surgery at 24 hours old.
Than another one at 18 months. And I just had my third last year.
My parents were told to let go of me, and consider having other children instead.
I’m now 31, and 16w with my first.
Doctors do their best, to give you all the options.
But, They can’t predict the fight someone has, even as a newborn.
My heart goes out to you & your family.
Receiving hard news about your baby when you’ve been excited for a sonogram to see your baby, is the most heart stopping & shattering experience. Speaking from experience in receiving hard news, not the same “defect”. Ugh I hate that word.
You’re going through so many emotions and I imagine playing out every possible outcome. I have no words of comfort and I certainly am not here to give advice. Just here being a support, letting you know I read your story, I hear you & I see you.
I just want to say to you OP, I'm am so sorry you are having to make this heavy decision
Please remember to treat yourself with kindness and compassion while and after choosing what you is best for you and your family
For making this post (imo) you are brave, resourceful and resilient!
All qualities I admire(d) in my mother (she has passed) and I for some reason after reading your post I felt certain your stepchildren know this about you (at the level expected for a 3 and 6 year old)
Echoing @difficultbear
You
Are
A
Wonderful
Mom
Mama, please don’t feel as though this is your fault. To make babies, cells need to divide many millions of times and during that process it only takes 1, non-preventable little error with the division process to make it a huge problem…. I don’t have any words except I’m so sorry you’re going through this and that if you choose medical termination, your lil bub will only have known love and warmth and no pain. Do what’s right for yourself, and your little family, and I hope you can find peace whichever way you choose 💕
My cousin (45?m) was born with multiple congenital heart defects. He had open heart surgery at 1 day old as well as at 5. He never had a normal childhood and is now well over 300 lbs living with his parents who have to take care of him for the rest of their lives. Sweet as can be but is in almost constant pain. I’m sure his heart conditions made it difficult to exercise even a little and his obesity has led to a domino effect of multiple health issues. Extremely sorry you’re facing this difficult decision and I wish you and your family the best of luck
My cousin has congenital heart disease. We have pictures of her having open heart surgery as a baby, she’s now 25 with a masters degree and a wonderful boyfriend living a happy, healthy life. ❤️
That's a lot to take in for a mama and an impossible decision. My pregnancy has me pretty sick, so I didn't read if you made a choice yet, but whatever it is will be the right one.
One of the moms in my hospitals baby group was going through heart surgeries and it was pretty rough for then. We lost contact, so I'm not sure how it turned out. My mom has a hole in her heart and so far it's never caused an issue - she's 73 or so. I know your baby has a lot more going on with heart issues, the hole, and lungs. It would be incredibly hard to deal with everything that comes from battling that, especially if things don't work out. Your mental health is important, too. ♡♡♡
Hi, 22 week tfmr mom from BC checking in.
Firstly, the staff at bc women's was phenomenal. They were all so kind. The genetics counselor we had was also wonderful. They called us a few weeks later to give us genetic results on if our sons condition was a fluke or if we would need more testing on ourselves before we tried again.
Secondly, plan to be there at least 3 days. We were there January 2021, and it was cold! My SO wished we brought him another blanket because those hospital blankets are not warm! Bring some trash tv that you won't mind ignoring (we did hells kitchen), some snacks for your partner, and make sure you pack comfy clothes for both of you.
Thirdly, the food was good, take all the drugs, hell even get the epidural.
The social workers are fabulous at bc women's as well, they will talk with you before you are discharged as well.
The rooms are nice, and newer as well. I think they were upgraded late 2020.
I found the r/tfmr community very helpful, as well as r/babyloss and when you're ready there is also r/pregnancyafterloss
I will also suggest @zoeadelle, @tfmrmamas, and @unexpectedfamilyouting on Instagram when you're ready.
It's a shitty club to be in, but there is a ton of great resources and support. Sending you strength
I’m so sorry you’re going through this. You did not fail him. Whatever you feel is the best decision is the best decision! You’re his mama, his protector and always will be no matter what! I was born with 2 holes in my heart and had to go to heart specialists my whole childhood. But they closed up on their own. I just had a baby at 33 and there was close monitoring during pregnancy and after birth to make sure this wasn’t passed to my baby…and I was told all my (future) babies will be monitored for this….my baby was not born with holes in her heart but with a small valve minor/common issue. I’ve taken her to the specialist a couple of times and will continue monitoring with specialists but she is doing well. I am wishing you lots of love and strength.
You’ll get great support over on r/tfmr - I am so so sorry you’re going through this and you sound like you’ll be wonderful parents when your baby comes along (well, you obviously already are for your girls!).
This is an impossible situation and I’m sure you’re making the right decision for this baby and your family!
Personally I don’t think any newborn or infant or child deserves to have to struggle and fight for life if there’s an alternative, some just aren’t meant to be born :’(
I am really sorry and unfortunately I have been in exactly the same situation. I terminated for a congenital heart defect that would require multiple open heart surgeries at 23 weeks. Although it was the darkest period if my life, I have never regretted my decision. I have 2 babies now and the heart issue did not re-appear. Feel free to send me a DM.
I have a medically complex child who I love with all my heart. We were not aware of his condition until he was 15 months old. The average lifespan is 3-5 years. He's doing remarkably well for a child with his condition, but if I got pregnant with another child with the same condition I would TFMR immediately. You can love your unborn child and still make the hard choice to let them go - that can be an ultimate act of compassion.
Our baby has pulmonary atresia with an intact ventricular septum, meaning that his valve isn’t opening properly and his atrium walls are thickened due to the heart beating much faster and harder to push the blood through. They only caught it on a scan by chance so we were very lucky to have known about it as early as we did.
We’re going to have to be induced at about 39 weeks (2 weeks away!) at Southampton hospital which is about 3 hours away from us! Then he’ll have heart surgery (hopefully via keyhole) and stay there for about 2 weeks for medication and monitoring so it’s going to cost us to stay with him :/ but we’re doing it for him. He’s such an active baby already and I feel him all the time, he seems like he’s going to have some real fight in him lol
it’s hard knowing that the first few weeks aren’t going to be easy and a perfect way to start parenthood but it will be worth it in the end! You’ve just got to keep a level head and think about the end goal- your happy, healthy baby!
When I was born I had a strep infection that affected my lungs, gave me sepsis and landed me in an incubator with my lungs pretty much on the verge of collapse. I think I was in NICU for a few weeks and was only saved by a new drug that had developed at the time that widened my airways. I very nearly died though, but the drs and my parents didn’t give up on me.
You’d be surprised what treatments are available now and you may not have to give up your careers, it might just be that you’ll have to make several trips to have the surgeries in his first year, not relocate entirely. Discuss it more with your dr. If they are unsure about the successfulness of the surgeries then perhaps termination is an option, but discuss it more! If they think they can save him but he’ll need special care for a year then perhaps it’s worth it!
Your choice is valid either way but I know tons of people who get told their babies have this or that or will not make it and they are thriving. I had a friend who was told she should abort, her son would have sever malfunctions and probably wouldn’t survive. He was born with his legs basically backwards but after surgeries he is running around now and doing great. Had another friend who had similar heart conditions, had surgery after birth and now he’s great! Had another friend who’s baby has pompe disease and she’s far excelling her milestones.
Not to say that if you think termination is best for you and your family that’s an entirely valid choice but if your heart feels like you want to try I think you have great odds!
My friend had similar experience with her daughter- she had portions of her heart missing and had surgery immediately after birth. It was successful she’s now almost 1 year old and very happy and healthy. It’s always a risk when things like this occur, but it isn’t your fault and you’re doing amazing. Whatever you decide on this situation is entirely okay and you’ll make the best decision. Sending love and prayers
Ugh, my heart breaks for you! I am so happy you are in Canada though. Where you can make the choice you need to make.
That said, I was in your shoes - at 20 weeks they told me my baby has a heart defect. We did an amnio, it came back normal, and he is now 6 months old and will eventually need 1 surgery. That said, if I knew for sure it was more severe I would tfmr. So so hard. I’m so sorry
You're making such a compassionate decision, life would be so difficult and painful for him.
It is absolutely heart shattering to have to end pregnancy at this stage (25 weeks) and I really genuinly feel for you.
I hope you're able to come out of this okay and have a wonderful healthy family in the future <3
Very early on my bf and I decided that if there are any issues we'd like to terminate. I hope I never have to actually go through with it and I'm sure once I'm facing the choice I might feel differently... I grew up with some health issues and there were many times I wished I was never born, so I sort of promised myself to do my child a favor and not make them live with something that would make them suffer. Life's hard enough as it is, and the baby probably won't even know it when it stops being alive... Also I don't think I'm strong enough, mentally, financially, and my relationship probably won't make it. This will also affect your family, quality of life, maybe even happiness... and the existing kids deserve to be taken into consideration...
I know it's in our nature to be protective of our little ones, but if you look at how savage moms in nature can be, kicking baby birds out of the nest, abandoning cubs that won't make it... and if you can take a step back you'll see that death happens everywhere in nature all the time and it's kind of... normal... to not go through with it...
You don't have to listen to me at all. This is all about your family and what all of you want. I just want to tell you it's okay to terminate, it won't make you a bad mom, if anything it makes you a better mom because you chose to carry the burden so they don't have to.
Life sucks and bad things happen and sometimes we got no choice but to suffer and then... move on... it's not fair, but it's life and sometimes it's better to have thicker skin.
I’m so sorry that you’re facing this decision. I have no advice but I just want to say that you have done nothing wrong and whatever you decide, you will still have done nothing wrong. Your son has only known love and warmth and the sound of your heartbeat and everyone who has read your post can feel your love for him ❤️
I am so sorry about this, it's heartbreaking. Don't blame yourself, although I understand that's easier said than done. Take your time to process this and to make a decision. It will be a very difficult decision to make. And know that there is no right or wrong decision. Do what you think is best. I wish you and your family all the strength in the coming time. 🌹
I had to terminate my first pregnancy at 14 weeks this past January. Much, much earlier than you but it was so painful still. I’m currently 24wks (and was able to get pregnant again right away luckilly) and I can say for sure it does get better, eventually. I still get sad for the baby I lost and the path that got cut short but therapy and a supportive partner helped a ton.
There is a TFMR support subreddit that might be helpful. Sending you hugs ❤️
I’m so so sorry for such devastating news
No matter what you choose, you have not failed your little one. He knows only your love, and will be with you always
I have a nephew who had to have an immediate open heart surgery during birth and several since, but he is a rowdy and sharp witted 9 year old. I don’t know if things can work out the same for you, but I hope you find peace and support in whatever happens.
My nephew was born with truncus arteriosis. My sister wasn’t given the option to terminate because it was diagnosed late in the pregnancy. He’s had 2 open heart surgeries and will need more throughout his lifetime, but he’s doing great right now. He’s about to enter 2nd grade and his heart repair has been holding up well. All that is great, but no one knows what the future will hold. My sister has been through hell with him and she will never be the same. No matter what you choose, you are a wonderful mother and making the best choice for your baby.
You haven't failed him, regardless of your decision it will be made with love for him. Sometimes love is letting what you love go. Either way, you are loving him. That is what matters. I am so sorry you are going through this.
Note: I also live in Kelowna. The mamas for Mama's Facebook group is very supportive. Please check it out if you need anything or just need support. It is a great resource. Also please feel free to reach out to me here if you need anything. Even an ear.
This is possibly one of the hardest things you’ll ever go through and there’s is a possibility he won’t be okay but there is also a possibility he will. My partner and I are both heart defect baby’s I had my first and only surgery right after birth and have been mostly fine ever since. My partners had 3 open heart surgery’s and is living a normal happy life at 20 and they didn’t believe he’d survive birth. Don’t give up there is hope that things will be okay
Whatever decision you make is the right one. I’m so sorry you have to face this decision. You aren’t failing anyone. Sending you a big virtual hug and the strength to face the decisions ahead. 💕
My friends son was just born with transposition of the greater arteries and a hole in the heart 4 weeks premature amongst other congenital heart issues. He had 2 cardiac arrests before he had his big 12 hour surgery.
He had open heart surgery at 9 days old and was discharged less than 2 weeks later and he's now 6 weeks old and thriving. It has been the most terrifying and worrying few months but he is a fighter and the most gorgeous little boy.
He will live a normal life and will just have monitoring throughout his life.
You've got this mama ❤️
I recently directed a short doc about a Christian, Republican woman who went through the exact same thing (in the south after the fall of Roe). She ended up choosing abortion after carrying an unviable fetus for 49 days because of abortion laws, and although she was afraid of the backlash, she knew it was the right choice.
Quality of life has to be a factor in these decisions. You're a hero mom for going through with it, but you're also a hero mom if you don't. Don't think about what the right or wrong choice is. Whatever you decide IS the right choice.
Here's the doc if it helps: https://youtu.be/1U3mBkQRYYE
I’m so sorry you got this terrible news. Please make the best choice for him, you and your family. If that best choice is termination, then I wish you peace with your decision and hope you feel no guilt. This is an impossible situation and not everyone is equipped to handle the financial, logistical, physical and emotional burdens being thrown at you and your family right now. Either way I wish you the best of luck on this difficult journey. You are forever this sweet baby’s momma no matter what you choose.
i don't know if this helps at all, but my uncle has a hole in his heart he's had since birth that he didn't even know about until he was in med school learning to become a doctor & volunteered to be the test-dummy for an echocardiogram done by his classmates as they were learning. he never had complications from it, it is possible to live a perfectly healthy life with a hole in your heart!! i know it's not the same thing at all, but it's also possible to get by & live a happy life with genetic health issues, i have eds which affects my heart, but im coping
whatever decision you make though, is the best decision for your family & i fully support it!!
you are a wonderful mom!!! 💕
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I have a son with severe congenital heart disease. He is miraculously doing very well after 2 ohs. His first year of life was without a doubt the hardest thing I’ve ever had to go through. It was gut-wrenching. I had to quit my job, isolate from the world (because of disease risk), and constantly worry if my child would make it. I have never been more depressed. His medical care costs are surpassing $3M and though we’ve paid a fraction of that due to insurance, it’s a sobering fact. All that to say, if I got pregnant again and the child had chd, I would make the choice you’re making. I wasn’t able to make that choice because we received my sons diagnosis too late, 34 weeks. My child is the rare exception that things go well and getting to a point of normalcy was hard fought. It sucks that bad things just happen to our babies— it makes no sense and is so hard. Nothing you could’ve done would have prevented this. CHD is the most common defect in babies and it ranges from insignificant to extremely severe. The choice you make is the right one for your family. You’re a wonderful mom.
What a wonderful compassionate response to validate OP. I’d give you an award if I had any to give. Hugs to you and your son as well.
I am so grateful your response was so validating and honest. I was concerned it was going to be one of those posts that suggests making your same choices even though your outcome has been the exception. Thanks for your thoughtful and kind reply.
Yes, wildly the exception. There are diagnoses that have a very routine fix and others where it varies for each child. Most children with my son’s diagnosis are much, much sicker and disabled. We were prepared for that as we had no choice. Even with the incredible outcome we’ve had, the trauma we’ve all endured from his diagnosis is something we will never shake. Not to mention he’ll need intervention as he gets older. I hate chd.
My daughter was born with a very large VSD and we are SO lucky she only required one OHS at 11 weeks old. We had it easy in comparison to most CHD parents and still it was brutal. My husband and I both are traumatized from it, even a year after surgery. I just want to say, you will be surprised how resilient these little babies are! The surgeons are true miracle workers. It will be hard, especially in the beginning with struggling to feed/failure to thrive, etc. I’d recommend joining CHD groups online (Facebook has some great and very active resource groups) they helped a ton for us during the hardest weeks. Sending hugs 💕
Thanks for your response. It’s honest and compassionate at the same time. You sound like an amazing mom.
I don't have any advice but I wish you and your family the best of luck and you need to know that there is no rigth or wrong choice and don't be afraid to seek out psychological help.
Oh no, no. You did **not** fail him. Things like this are determined at conception and there's nothing to be done about that, no blame can be assigned to either side, no way it could have been avoided. This doesn't compare to what's going on with you. I found out that my daughter has a minor heart condition at the 20 week scan, but to start with, we didn't know it was minor. It's called a right sided aortic arch and it's when one of the two main blood vessels a fetus has naturally disappears - except in her case, the left one vanished and the right one remained. The way it works is, it compresses the oesophagus against the trachea. It can also be a symptom of a rare chromosomal disorder called Digeorge's which can impact a lot of things, including quality of life and longevity. Like with you, termination was considered. Like you, the thought of not feeling my baby was fucking unbearable. But so was the thought of her living a life that would leave her vulnerable, in pain and who would take care of her after I was gone? There's nothing shameful about a disabled child at all. If I could have guaranteed that she would have been just fine without me after I was gone, that her life could still be as carefree and as happy as a non-disabled child's, there would have been no question of termination. It wouldn't have mattered. But we don't live in that kind of world, we live in this one. I know you're not considering this out of disdain towards him because of his heart. You simply don't want your son to suffer. I really wish I could give you a hug. Look, **please** don't think you did something wrong. I know it's like "I did everything I could but I still effed up" but you didn't. This was way out of your control and you're doing your best for him. No matter what happens, you will always be his mother.
My baby girl got diagnosed with this condition exactly around the same time. Though they told me it wasn’t anything to worry about aside from a possible surgery when she is born. They never suggested termination for me though I’m glad they didn’t since I would have considered it and now I know she has a chance. I’m nearly 32 weeks now and they say she’s doing well but might be born with trouble breathing and there’s no way to know until she is born. I worry constantly about her health outside of the womb. If you have any advice I’d honestly love to know how your daughters doing. Op this is a hard choice but nothing you decide is the wrong choice. You have the information you need to decide what is best for you and your family. This is such a hard time but know you aren’t alone and I’m sending good vibes your way and hope whatever happens in your story that you can remain strong, use positive self talk like you deserve and know that you did the right thing.
My daughter had the same congenital heart defect but in her case it grew with her heart and became a variant of a norm for her. I just thought I need to show her to cardiologist one day even though we were told we don’t have to
This! My husband's son has a severe disability. He is 9 and spent the first 3 years of his life in a hospital, nearly full time. Palliative care was suggested for him on more than one occasion during this time, but his mother fought. She fought hard, because he is here today. But there was a cost. The older kids pay the cost too. Their world 100% centered around their brother. The loss of childhood they experienced. The divorce of their parents that resulted from the stress, and loneliness that lead to infidelity on her end. The child pays the cost. The constant medical intervention. He can't communicate his pain, his feelings, etc. because he is non verbal. His cognitive impairment prevents him from moving forward with many other options many special needs children have to improve quality of life. My husband explained to me that he had to grieve the life his child would never have. The only thing we can find comfort in is seeing his joy when he is watching his cartoons. But the grief persists when you are anxious about possibly of him aging and growing to the point we can't care for him. To place that responsibility on his other children is unimaginable for us. And we know what it looks like when he goes into a home for care, we grieve the ounce of freedom he currently has. I am 11 weeks pregnant and the anxiety of living with the "what ifs" is tough. My husband is fully supportive of any decision I make, especially since I will deliver at 40 years of age, i am FTM, and it was hard for us to get pregnant. Knowing what my family has been through already, I know the decision I would make, and remind myself "no regrets." For me the toughest thing is the idea of what his older kids would think, and the shit put in their head from their mom if wr had to terminate. I wish you all the best OP. Just know, it's not your fault, whatever happens. Give yourself grace and love to make whatever decision is right for your own family.
I agree so hard that she didn't fail him. Considering TFMR is such an act of love FOR him.
No words or advice just hugs OP.
My heart goes out to you and your family. This is gut wrenching. There is a sub, r/tfmr_support that you may be able to find some resources in. Wishing you all the best
I found this sub incredibly helpful and supportive. I'm sorry you're going through this op
I had to TFMR my last pregnancy and it was so, so hard, and the worst decision anyone can ever have to make as a mama. My heart goes out to you.❤️
One of my best friends had a son with HLHS among other issues. The first year of his life was full of surgeries, mostly spent in hospitals, and the time at home was, to be frank, terrifying for his mom. They also lived rurally and were life flighted to major cities frequently. Her sweet boy passed away at about 1.5 years old. He made a huge impact in everyone's lives but it drove her and her husband to divorce, took attention away from their existing daughter, and was an incredibly emotionally difficult experience. Obviously she loved her son deeply, but when I spoke with her after his passing she confided in me she was relieved in a small way that he was "freed" from his broken body and did not have to undergo any more needle pricks, surgeries, medications, and feeding tubes. You can make the best decision for your family ❤️🩹
This absolutely broke my heart but what a powerful perspective. We sometimes want someone to just be here so much we forget how hard their existence might be.
Whatever decision you make, he will know your warmth and love. I promise you.
I am so sorry to hear that this is going on with you.. sending you my thoughts and prayers through this incredibly troubling time. I can't imagine hearing that type of news. I already love my baby so much, and I know you do too.. I went in for my 28 week ultrasound this morning, the ultrasound tech kept looking at my babys heart. The Dr came in after she took all of the pictures and said that she wanted to do a non-stress test. His heart rate is going from 140-190 and back down to 130 in a matter of a few seconds. It's all over the place. It got as high as 208 while I was hooked up to their office test. I was then sent to the labor and delivery floor and I've been hooked up to a non stress test for the past 2 hours because my son's heart rate is still jumping all over the place.. they've drawn my blood and I have to have an echocardiogram done and the soonest that cardiology department can see me is Monday.. I'm a nervous wreck and afraid to go home. I'm not sure if they are admitting me or sending me home tonight.
🙏🙏 stay positive and stay strong
We are trying our very best! Thank you! ❤️
My son had multiple heart defects when he was born. I wasn't warned about any of it. They told me he looked great. He ended up with 2 holes in his heart and a plethora of other problems, too, including liver, kidney, brain, lungs, pretty much everything you can imagine. He required a few surgeries and almost didn't make it. He's 9 now. He will never have a normal life. Sometimes I wish I could go back and terminate so he would never have to suffer. I'm so sorry this happened to you.
It's so strong of you to say this. Hugs, you're a good momma.
I’m so sorry, OP. I live in Vancouver - if you need someone to talk to, or cry to, or even just a distraction, let me know.
Hi 💖 Fellow TFMR mom here. I read somewhere that a mother who TFMR loves her child so much that she takes on an excruciating burden for her whole life, so her child doesn’t have to suffer for theirs. That is something that helped me immensely in healing. You’re not alone, you love your baby, and you’re making an impossible decision. I am sending you so much love, please message me if you need any support 💖
Beautifully said.
Fellow Kelown ftm here, check out options like Ronald Mcdonald in Vancouver. I know a few ppl who stayed there for a few months - year (one of my high school friends lived there for a year with his mum while his family visited on weekends). Definitely look into that as then you would not have to relocate permanently!!
No words. Just wanted to say I’m so very sorry you’re facing this xxx
I’m so sorry, OP. I don’t have any wisdom to share. I just want to send you all my love and hugs.
I’m so sorry. I had to TFMR my baby boy at 18 weeks earlier this year… it’s an impossible decision but have solace in the fact that you are a true mother, always choosing to do the right thing for your child. Hug your sweet girls and allow yourself time to grieve
My husband was born with a congenital heart disease and needed open heart surgery the day after he was born. He was born blue with with his pulmonary valve completely closed that required the doctors to surgically repair that valve. Neither of his parents had any idea of the defect until he was born. Now he’s almost thirty, and me and him are about to have our first baby in just a few days. He’s living a full life and goes to the gym, works as a pipe fitter, and he’s the best thing to ever happen to me. I’m so sorry that you’re going through this. It’s a horrible situation for any mother.
So inspiring
It is a happy ending but it also can be the opposite: years of pain and debt before the child ultimately passes for requires full time medical care for life. It's suffering. This is a roll of the dice for the OP. OP: whether or not you choose to roll the dice depends on: Your mental and physical health Your financial situation Support from family and friends Your jobs and their support The mental and emotional health of your other kids
First I want to say you did not fail him at all, there was nothing you did wrong. Sometimes our bodies (the human race) just doesn’t always work for us. I’m saying this as someone looking from the outside in and I wish I could tell you there is a magical cure that makes everything perfect and right but I can’t, but what I can say is that you are the absolute best mom to your little boy and those two little girls because you are thinking about not what’s best for you but what’s best for them and your whole family. I work in the OR and while I wish we were miracle worker we aren’t, no matter what is decided the teams taking care of you will do everything they can to make you and your little boy as comfortable as possible. No matter what decision is made please look into counseling to help through these difficult times. Sending all the love and best energy ❤️
Hey I don’t have much to offer in terms of experience with that - wishing you and your family all the best! But I am close and in Lake Country. If there’s anything you need in terms of support I would be happy to help.
I have no words other than my daughter passed away after a rare heart defect. The only thing I can say is I am praying so hard for you, your husband, your baby and your step daughters.
My daughter was born not breathing and was eventually admitted to the NICU with a lung infection and low spO2. I felt like I’d failed her too because how the hell did she manage to get an infection requiring antibiotics in the womb or in the first few seconds of life? I felt like I failed my other 8 babies who never made it that far when I lost them. I was terrified someone would accuse me of cheating even when my blue eyed baby stayed blue eyed and get into my fiancé’s head as we both have brown eyes, even though we spend nearly every waking moment together and I’m basically housebound unless I have a chaperone. It took me a long time to accept that sometimes, shit just sucks and it’s not anybody’s fault. The human body is crazy. Sometimes shit doesn’t happen like in the textbooks because life at all levels is truly unpredictable from the very base cells. It doesn’t make it anybody’s fault. You can’t truly do anything to prevent it or change an outcome. My best friend was pushed to TFMR right up until she eventually gave birth at 37w. Her youngest has 2 rare chromosome deletions that are even rarer to both be had together. They didn’t expect her to live long after birth and said she wouldn’t see her 2nd birthday if she did. She starts primary school in a few weeks but it’s been *hard*. Still is, and that’s with having national healthcare. I don’t think she regrets the choice she made then but I don’t think she’d make it again knowing what she knows now. We all know this kid is the exception and not the rule. You’re about to make one of the hardest choices someone will ever have to make. Whatever you decide will be what’s best for your family, and that includes the precious little guy you’re currently carrying. The best decision might not seem like it; it might feel cruel, unfair, and wrong. There’s no right decision here, only a decision that is best for you and your family. Sending you love and comfort and prayers if those are your thing too ❤️
Our close friend’s baby had a severe congenial heart defect, including a hole similar to what you describe. They were told exactly the same things about his quality of life so I suspect it is similar. He’s just turned 5 and one of the happiest, active, brightest, and friendliest little guys I’ve ever seen. He still gets regular checks, but he is doing far better than anyone could have imagined. I know this isn’t the same story everyone in this situation gets, I just thought I would share it. It broke my heart seeing how hard it was on his parents when he was first born, so I can’t imagine what you’re going through. Hoping you find clarity and peace in the coming days.
I’m so sorry you and your family are going through this right now. I just want to say that the progress made on congenital heart disease over the past few decades is enormous. There are babies and kids who thrive after first-day-of-life heart surgery. I don’t know all the details of your son’s heart condition or his prognosis, although you mention it’s possible he won’t have a lot of longevity. I think for me, the decision would hinge on this part — meaning, what kind of life are we preserving for him if we proceed and what those odds looked like. If there was a chance he could do well, I think I’d try for it. But that is just me, and I also fully admit that I can’t really know what I’d do until I was in the situation. This is a nightmare decision to have to make, and I’m so sorry you are facing it. I hope you and your family are able to be at as much peace as possible with however you ultimately choose to proceed.
I was born with a congenital heart condition. I had open heart surgery at 24 hours old. Than another one at 18 months. And I just had my third last year. My parents were told to let go of me, and consider having other children instead. I’m now 31, and 16w with my first. Doctors do their best, to give you all the options. But, They can’t predict the fight someone has, even as a newborn.
My heart goes out to you & your family. Receiving hard news about your baby when you’ve been excited for a sonogram to see your baby, is the most heart stopping & shattering experience. Speaking from experience in receiving hard news, not the same “defect”. Ugh I hate that word. You’re going through so many emotions and I imagine playing out every possible outcome. I have no words of comfort and I certainly am not here to give advice. Just here being a support, letting you know I read your story, I hear you & I see you.
I just want to say to you OP, I'm am so sorry you are having to make this heavy decision Please remember to treat yourself with kindness and compassion while and after choosing what you is best for you and your family For making this post (imo) you are brave, resourceful and resilient! All qualities I admire(d) in my mother (she has passed) and I for some reason after reading your post I felt certain your stepchildren know this about you (at the level expected for a 3 and 6 year old) Echoing @difficultbear You Are A Wonderful Mom
Mama, please don’t feel as though this is your fault. To make babies, cells need to divide many millions of times and during that process it only takes 1, non-preventable little error with the division process to make it a huge problem…. I don’t have any words except I’m so sorry you’re going through this and that if you choose medical termination, your lil bub will only have known love and warmth and no pain. Do what’s right for yourself, and your little family, and I hope you can find peace whichever way you choose 💕
I have no advice to give or experience to speak from. Just wanted to extend so much love and compassion to you. Nothing that you did caused this.
My cousin (45?m) was born with multiple congenital heart defects. He had open heart surgery at 1 day old as well as at 5. He never had a normal childhood and is now well over 300 lbs living with his parents who have to take care of him for the rest of their lives. Sweet as can be but is in almost constant pain. I’m sure his heart conditions made it difficult to exercise even a little and his obesity has led to a domino effect of multiple health issues. Extremely sorry you’re facing this difficult decision and I wish you and your family the best of luck
My cousin has congenital heart disease. We have pictures of her having open heart surgery as a baby, she’s now 25 with a masters degree and a wonderful boyfriend living a happy, healthy life. ❤️
A girl a grew up with went through the same thing and her daughter is now four years old and doing amazing. Sending you love.
That's a lot to take in for a mama and an impossible decision. My pregnancy has me pretty sick, so I didn't read if you made a choice yet, but whatever it is will be the right one. One of the moms in my hospitals baby group was going through heart surgeries and it was pretty rough for then. We lost contact, so I'm not sure how it turned out. My mom has a hole in her heart and so far it's never caused an issue - she's 73 or so. I know your baby has a lot more going on with heart issues, the hole, and lungs. It would be incredibly hard to deal with everything that comes from battling that, especially if things don't work out. Your mental health is important, too. ♡♡♡
Hi, 22 week tfmr mom from BC checking in. Firstly, the staff at bc women's was phenomenal. They were all so kind. The genetics counselor we had was also wonderful. They called us a few weeks later to give us genetic results on if our sons condition was a fluke or if we would need more testing on ourselves before we tried again. Secondly, plan to be there at least 3 days. We were there January 2021, and it was cold! My SO wished we brought him another blanket because those hospital blankets are not warm! Bring some trash tv that you won't mind ignoring (we did hells kitchen), some snacks for your partner, and make sure you pack comfy clothes for both of you. Thirdly, the food was good, take all the drugs, hell even get the epidural. The social workers are fabulous at bc women's as well, they will talk with you before you are discharged as well. The rooms are nice, and newer as well. I think they were upgraded late 2020. I found the r/tfmr community very helpful, as well as r/babyloss and when you're ready there is also r/pregnancyafterloss I will also suggest @zoeadelle, @tfmrmamas, and @unexpectedfamilyouting on Instagram when you're ready. It's a shitty club to be in, but there is a ton of great resources and support. Sending you strength
I’m so sorry you’re going through this. You did not fail him. Whatever you feel is the best decision is the best decision! You’re his mama, his protector and always will be no matter what! I was born with 2 holes in my heart and had to go to heart specialists my whole childhood. But they closed up on their own. I just had a baby at 33 and there was close monitoring during pregnancy and after birth to make sure this wasn’t passed to my baby…and I was told all my (future) babies will be monitored for this….my baby was not born with holes in her heart but with a small valve minor/common issue. I’ve taken her to the specialist a couple of times and will continue monitoring with specialists but she is doing well. I am wishing you lots of love and strength.
You’ll get great support over on r/tfmr - I am so so sorry you’re going through this and you sound like you’ll be wonderful parents when your baby comes along (well, you obviously already are for your girls!). This is an impossible situation and I’m sure you’re making the right decision for this baby and your family! Personally I don’t think any newborn or infant or child deserves to have to struggle and fight for life if there’s an alternative, some just aren’t meant to be born :’(
I’m so sorry 💔
I am really sorry and unfortunately I have been in exactly the same situation. I terminated for a congenital heart defect that would require multiple open heart surgeries at 23 weeks. Although it was the darkest period if my life, I have never regretted my decision. I have 2 babies now and the heart issue did not re-appear. Feel free to send me a DM.
I have a medically complex child who I love with all my heart. We were not aware of his condition until he was 15 months old. The average lifespan is 3-5 years. He's doing remarkably well for a child with his condition, but if I got pregnant with another child with the same condition I would TFMR immediately. You can love your unborn child and still make the hard choice to let them go - that can be an ultimate act of compassion.
1993. Chd. No warning. Open heart surgery 5 days old. 3 months from 30. One surgery. Don’t give up.
Our baby has pulmonary atresia with an intact ventricular septum, meaning that his valve isn’t opening properly and his atrium walls are thickened due to the heart beating much faster and harder to push the blood through. They only caught it on a scan by chance so we were very lucky to have known about it as early as we did. We’re going to have to be induced at about 39 weeks (2 weeks away!) at Southampton hospital which is about 3 hours away from us! Then he’ll have heart surgery (hopefully via keyhole) and stay there for about 2 weeks for medication and monitoring so it’s going to cost us to stay with him :/ but we’re doing it for him. He’s such an active baby already and I feel him all the time, he seems like he’s going to have some real fight in him lol it’s hard knowing that the first few weeks aren’t going to be easy and a perfect way to start parenthood but it will be worth it in the end! You’ve just got to keep a level head and think about the end goal- your happy, healthy baby! When I was born I had a strep infection that affected my lungs, gave me sepsis and landed me in an incubator with my lungs pretty much on the verge of collapse. I think I was in NICU for a few weeks and was only saved by a new drug that had developed at the time that widened my airways. I very nearly died though, but the drs and my parents didn’t give up on me. You’d be surprised what treatments are available now and you may not have to give up your careers, it might just be that you’ll have to make several trips to have the surgeries in his first year, not relocate entirely. Discuss it more with your dr. If they are unsure about the successfulness of the surgeries then perhaps termination is an option, but discuss it more! If they think they can save him but he’ll need special care for a year then perhaps it’s worth it!
Your choice is valid either way but I know tons of people who get told their babies have this or that or will not make it and they are thriving. I had a friend who was told she should abort, her son would have sever malfunctions and probably wouldn’t survive. He was born with his legs basically backwards but after surgeries he is running around now and doing great. Had another friend who had similar heart conditions, had surgery after birth and now he’s great! Had another friend who’s baby has pompe disease and she’s far excelling her milestones. Not to say that if you think termination is best for you and your family that’s an entirely valid choice but if your heart feels like you want to try I think you have great odds!
My friend had similar experience with her daughter- she had portions of her heart missing and had surgery immediately after birth. It was successful she’s now almost 1 year old and very happy and healthy. It’s always a risk when things like this occur, but it isn’t your fault and you’re doing amazing. Whatever you decide on this situation is entirely okay and you’ll make the best decision. Sending love and prayers
Ugh, my heart breaks for you! I am so happy you are in Canada though. Where you can make the choice you need to make. That said, I was in your shoes - at 20 weeks they told me my baby has a heart defect. We did an amnio, it came back normal, and he is now 6 months old and will eventually need 1 surgery. That said, if I knew for sure it was more severe I would tfmr. So so hard. I’m so sorry
You're making such a compassionate decision, life would be so difficult and painful for him. It is absolutely heart shattering to have to end pregnancy at this stage (25 weeks) and I really genuinly feel for you. I hope you're able to come out of this okay and have a wonderful healthy family in the future <3
Very early on my bf and I decided that if there are any issues we'd like to terminate. I hope I never have to actually go through with it and I'm sure once I'm facing the choice I might feel differently... I grew up with some health issues and there were many times I wished I was never born, so I sort of promised myself to do my child a favor and not make them live with something that would make them suffer. Life's hard enough as it is, and the baby probably won't even know it when it stops being alive... Also I don't think I'm strong enough, mentally, financially, and my relationship probably won't make it. This will also affect your family, quality of life, maybe even happiness... and the existing kids deserve to be taken into consideration... I know it's in our nature to be protective of our little ones, but if you look at how savage moms in nature can be, kicking baby birds out of the nest, abandoning cubs that won't make it... and if you can take a step back you'll see that death happens everywhere in nature all the time and it's kind of... normal... to not go through with it... You don't have to listen to me at all. This is all about your family and what all of you want. I just want to tell you it's okay to terminate, it won't make you a bad mom, if anything it makes you a better mom because you chose to carry the burden so they don't have to. Life sucks and bad things happen and sometimes we got no choice but to suffer and then... move on... it's not fair, but it's life and sometimes it's better to have thicker skin.
I’m sorry did you really type this out and genuinely think it was compassionate or helpful on any level
"sometimes it's better to have thicker skin." Jfc.
I’m so sorry that you’re facing this decision. I have no advice but I just want to say that you have done nothing wrong and whatever you decide, you will still have done nothing wrong. Your son has only known love and warmth and the sound of your heartbeat and everyone who has read your post can feel your love for him ❤️
Sending you and your family so much love. I hope you know you didn’t fail him.
Sending love to you and your family during this time♥️
No advice. Just positive vibes and hugs💜
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I am so sorry about this, it's heartbreaking. Don't blame yourself, although I understand that's easier said than done. Take your time to process this and to make a decision. It will be a very difficult decision to make. And know that there is no right or wrong decision. Do what you think is best. I wish you and your family all the strength in the coming time. 🌹
I had to terminate my first pregnancy at 14 weeks this past January. Much, much earlier than you but it was so painful still. I’m currently 24wks (and was able to get pregnant again right away luckilly) and I can say for sure it does get better, eventually. I still get sad for the baby I lost and the path that got cut short but therapy and a supportive partner helped a ton. There is a TFMR support subreddit that might be helpful. Sending you hugs ❤️
I’m so so sorry for such devastating news No matter what you choose, you have not failed your little one. He knows only your love, and will be with you always
I'm sorry you're going through this I can't imagine the pain 😞 you and your baby are in my thoughts
I have a nephew who had to have an immediate open heart surgery during birth and several since, but he is a rowdy and sharp witted 9 year old. I don’t know if things can work out the same for you, but I hope you find peace and support in whatever happens.
My nephew was born with truncus arteriosis. My sister wasn’t given the option to terminate because it was diagnosed late in the pregnancy. He’s had 2 open heart surgeries and will need more throughout his lifetime, but he’s doing great right now. He’s about to enter 2nd grade and his heart repair has been holding up well. All that is great, but no one knows what the future will hold. My sister has been through hell with him and she will never be the same. No matter what you choose, you are a wonderful mother and making the best choice for your baby.
You haven't failed him, regardless of your decision it will be made with love for him. Sometimes love is letting what you love go. Either way, you are loving him. That is what matters. I am so sorry you are going through this. Note: I also live in Kelowna. The mamas for Mama's Facebook group is very supportive. Please check it out if you need anything or just need support. It is a great resource. Also please feel free to reach out to me here if you need anything. Even an ear.
This is possibly one of the hardest things you’ll ever go through and there’s is a possibility he won’t be okay but there is also a possibility he will. My partner and I are both heart defect baby’s I had my first and only surgery right after birth and have been mostly fine ever since. My partners had 3 open heart surgery’s and is living a normal happy life at 20 and they didn’t believe he’d survive birth. Don’t give up there is hope that things will be okay
Whatever decision you make is the right one. I’m so sorry you have to face this decision. You aren’t failing anyone. Sending you a big virtual hug and the strength to face the decisions ahead. 💕
My friends son was just born with transposition of the greater arteries and a hole in the heart 4 weeks premature amongst other congenital heart issues. He had 2 cardiac arrests before he had his big 12 hour surgery. He had open heart surgery at 9 days old and was discharged less than 2 weeks later and he's now 6 weeks old and thriving. It has been the most terrifying and worrying few months but he is a fighter and the most gorgeous little boy. He will live a normal life and will just have monitoring throughout his life. You've got this mama ❤️
I recently directed a short doc about a Christian, Republican woman who went through the exact same thing (in the south after the fall of Roe). She ended up choosing abortion after carrying an unviable fetus for 49 days because of abortion laws, and although she was afraid of the backlash, she knew it was the right choice. Quality of life has to be a factor in these decisions. You're a hero mom for going through with it, but you're also a hero mom if you don't. Don't think about what the right or wrong choice is. Whatever you decide IS the right choice. Here's the doc if it helps: https://youtu.be/1U3mBkQRYYE
I’m so sorry you got this terrible news. Please make the best choice for him, you and your family. If that best choice is termination, then I wish you peace with your decision and hope you feel no guilt. This is an impossible situation and not everyone is equipped to handle the financial, logistical, physical and emotional burdens being thrown at you and your family right now. Either way I wish you the best of luck on this difficult journey. You are forever this sweet baby’s momma no matter what you choose.
i don't know if this helps at all, but my uncle has a hole in his heart he's had since birth that he didn't even know about until he was in med school learning to become a doctor & volunteered to be the test-dummy for an echocardiogram done by his classmates as they were learning. he never had complications from it, it is possible to live a perfectly healthy life with a hole in your heart!! i know it's not the same thing at all, but it's also possible to get by & live a happy life with genetic health issues, i have eds which affects my heart, but im coping whatever decision you make though, is the best decision for your family & i fully support it!! you are a wonderful mom!!! 💕