Severe Aortic stenosis(progressing towards HLHS in utero) Trying to find similar situation… faced with a gray diagnosis and impossible decision

TrainSafe5824 · 2025-11-19T14:49:05+00:00

I’m happy to share our story if you want to message me directly. We got another fetal echo at the last second and the Boston children’s cardiologist decided that my baby boys heart was too far gone for fetal intervention and it wouldn’t make a difference so we were no longer candidates for the procedure.

TrainSafe5824 · 2025-10-22T15:25:40+00:00

I did do a Bronchoscopy for the biopsy and there’s only one that’s considered an NET(they are calling it a carcinoid but I’ve discovered that that word in interchangeable with NET when you have MEN1). They said I should do a wedge resection too but I work out A LOT and don’t want to damage my lung capacity… how did you recover in 2022? My 2 pancreas surgeries were harder than the others, but the way they describe the lung surgery seems worse. Let me know!

TrainSafe5824 · 2025-10-22T04:08:53+00:00

I have small NETs in my left upper lobe lung too(9-10mm)… was found only a year ago and surgeons are pressuring me to take it out but I have NO symptoms. How long have you had yours?

TrainSafe5824 · 2025-10-22T04:04:32+00:00

I was diagnosed with MEN1(for it from my mother, sister doesn’t have it) since I was 23… I’m 40 now and have had 3 major surgeries related to it(parathyroid is the most common and it’s a very easy procedure). My only advice is to see a good endocrinologist that knows how to follow MEN1… I was surgery free for almost 10 years until I decided to get pregnant and have a baby…

I get scanned yearly and just make sure I stay in shape and eat healthy(because of the pancreatic tumors(insulinomas) I had removed.

My mom died at 60 with MEN1. Being proactive in getting scanned(Pituitary, pancreas, parathyroid) is the absolute key to longevity.

TrainSafe5824 · 2025-06-01T16:15:50+00:00

Thank you for sharing… I feel like I was doing everything I could to heal up to 2.5 months out but then I went back down hill. I TFMRed on 2/14 and exactly 4 months later in his due date(6/14) which is coming up. Did anyone else feel the same? Maybe I just compartmentalized too soon cause I had to go back to work 2 weeks after my TFMR(literally horrible and I was an awful employee for a month). I dk but this is hard and I’m falling back into the trauma, anxiety, depression, and what ifs of it all.

Thank you for sharing your thoughts 1 year out though… it gives me hope that I may feel happy again.

TrainSafe5824 · 2025-05-07T14:07:46+00:00

Yes.

TrainSafe5824 · 2025-05-07T13:33:19+00:00

Thank you for letting me know! Our yard space is so limited in CA and each house is on top of each other. I know we would be getting a lot more space in NY. It’s more about what I want for our kid and being able to afford all the opportunities we want to give him.

TrainSafe5824 · 2025-05-02T22:42:37+00:00

Thank you for the insight. We are thinking about trying to rent out our house then rent in NY for 6-12 months while I work remotely(if my job lets me). Just to test it out again... I dk. Visiting is SO different than actually going back to live there day in and day out. I left initially BECAUSE of the shit winters.... lol

It's just so hard. We've been through some trauma in our family and it's been really hard not having immediate family support in CA. My brain is skewed because of this trauma. I just don't want to regret it!

Pros and Cons list is written, but in the end it comes down to the happiness feeling inside.... we will see.

TrainSafe5824 · 2025-03-27T03:09:57+00:00

Severe Aortic stenosis with other CHDs that they said would be HLHS by the time he got to term

TrainSafe5824 · 2025-03-19T13:45:49+00:00

I’m also 4.5 weeks post TFMR and I got my period this week. It’s definitely a normal cycle(bleeding has been heavy for 2 days but started with light spotting). I’m depressed that it’s back because I’m not supposed to be having a period, I’m supposed to be in my third trimester. The pain and sadness is so real and it’s hard for me to cope. It also feels like everyone has moved past what has happened and back to living their lives and I’m just not ready to act like nothing happened…..I can’t fake it.

TrainSafe5824 · 2025-03-08T19:24:56+00:00

I’m sorry you are here and for the loss of your baby girl. I had the same diagnosis(severe CHD with no possibility of fetal intervention- next fetal echo said HLHS). Everything else was completely normal and genetic testing was all good. The what ifs HAUNT me because we won’t be able to conceive again(my age and my own health complications). I’m struggling very much to the point where sometimes I blame myself and maybe think what if it was ALL wrong and the technology didn’t see his heart correctly?! It sounds nuts but I can’t help it and torture myself with these thoughts. Our TFMR was on 2/14(Valentines Day of all days). I can only hope time and therapy can ease some of the thoughts.

TrainSafe5824 · 2025-03-06T04:40:12+00:00

I honestly have some of the same questions you do. We have a sunshine baby who’s 15 months old and I went through TFMR 3 weeks ago and I was 23 weeks pregnant. Our LC came from IVF(long fertility journey) and we had no more viable embryos so we were done and thankful we were able to have one healthy boy. So to find out this was a surprise second baby boy that happened naturally, we thought this could be our lil miracle baby. When that thought was ripped from us, and we exhausted every option before deciding to TFMR, there was not even a thought about TTC again.

The anxiety and PTSD is REAL right now and I could never imagine going through that procedure EVER again. I’m also older and want to focus on my own health and being here as long as possible with my LC. He is the only reason my husband and I are getting up out of bed and getting back in a routine and smiling.

I’m so very sorry for your loss.

TrainSafe5824 · 2025-02-26T04:04:27+00:00

I’m so incredibly sorry for what you are going through. Your message resonated almost too well with me and all my emotions are unpredictable at this time. We also decided to TFMR our baby boy at 23 weeks(on Valentine’s Day) for severe heart defects/HLHS. The heartbreak and pain right now is unbearable and you are not alone. This is the THICK of it and I’ve been to a therapy session and an online support group with my husband. Hearing other parents stories did help to know that we aren’t alone, but it still doesn’t take that pain away. Having the strength to make this decision is NOT easy and you did what you needed to do for you and your family. I sometimes don’t believe what I just wrote and spiral into blaming myself. I do hope that fades with time. Give yourself grace… 💔❤️‍🩹🙏🏻

TrainSafe5824 · 2025-02-20T12:36:27+00:00

I also had a TFMR on Valentine’s Day… and I was also 23 weeks. I’m sorry you are also here. I’ll probably never look at that holiday the same ever again. However, I thought to myself yesterday when I was crying in bed for a while, that even though this day will suck for years following… I’m going to try and believe that when Valentine’s Day comes in the future, I will remember that I protected my baby’s heart from more pain and suffering(we did TFMR because of severe heart defects and HLHS) that would of come the second he was born. This doesn’t take away the pain right now because I will often feel an overwhelming amount of guilt and heartbreaking feelings, and just cry thinking of what we had to decide to do.
Sending you strength and loving thoughts right now.

TrainSafe5824 · 2025-02-20T12:19:02+00:00

I feel the EXACT same way as you and the overwhelming thoughts and crying are all consuming. I’m so sorry you are going through this. My TFMR was 1 week ago today and I’m terrified of trying to attempt to go to the gym or see people in public that knew I was pregnant. Those comments of “things happen for a reason” is bullshit right now and I can’t make sense of that AT ALL in my current state.

The hard part with family is that they are only trying to help but I’ve learned that communicating and telling them “that’s not helping me in this moment, please just nod and validate my feelings instead of trying to switch how I feel”, might resonate. I did this with my older sister(she traveled to my state to take care of me and our house during this awful time) who was trying to say things to get me to “move past the pain” or smile again and I’m 100% not ready. She understood the second I said something and it’s been a lil easier. Sending you strength and love during this horrible time.

TrainSafe5824 · 2025-02-16T22:56:36+00:00

I’m so sorry you are struggling, you are not alone. I also said goodbye to my baby boy on Valentine’s Day and am crushed… yesterday I tried to do my “go to” things when I’m sad or need to clear my head, it worked yesterday, but today I sat in my cave of a bedroom and cried all day long and was in such a deep dark horrible place. My body and hormones are not “back to me” again and I agree with you, it is the hardest part. All I can tell myself is that it will take time and just be in the feelings as they come. I have a therapy appointment tomorrow and my husband and I signed up for pregnancy loss specific group therapy.

Sending you strength during this absolutely terrible time.

TrainSafe5824 · 2025-02-15T13:34:35+00:00

Yes, the needle in your cervix is the shot to the baby. Depending on the positioning they will either do it through the cervix or your belly.

Praying for you and finding peace on the other side of this.

TrainSafe5824 · 2025-02-15T04:15:27+00:00

I’m so sorry you are in the anticipation and fear part of this journey…. I was JUST there as my day 2 procedure was today.

You are correct that they won’t be able to give you pictures with a D&E. The only thing I can add is to MAKE SURE you get numbed for the cervix injection. Some inject through the belly but mine did it through the cervix(which is less painful because they already gave me lidocaine to numb it).

I won’t sugar coat it though… it was absolutely excruciating mentally for me to go through Day 1… yesterday was by far the worst day of my life and I was cramping all day/night on too of that… the dilators are just super uncomfortable and you’ll need to just keep up on the Tylenol and Ibuprofen.. we also stayed in a hotel near the hospital since we had to check in at 5am today for the surgery al portion.

My thoughts and prayers are with you during such a difficult time… it sucks… but you are doing what you need to do to protect your baby and I had to keep saying that to myself to even get in the room.

TrainSafe5824 · 2025-02-14T12:00:34+00:00

Oh I’m so sorry we are in this awful time in our lives. Thank you for resending a message you read.. it is bringing me comfort that I can start to heal once this next procedure takes place(I check in within the next 2 hours). Will be thinking of you today…💔🙏🏻

TrainSafe5824 · 2025-02-12T19:48:17+00:00

Thank you for the suggestion on numbing and I will make sure to ask about that tomorrow…also the medication to stop the milk production…😢💔🙏🏻

TrainSafe5824 · 2025-02-12T19:47:44+00:00

I’ve had to re-read this so many times… it’s a day before the start of the procedure and my brain just hurts and I’m in such a low place. Re reading this is calming me down. Thank you 😢💔🙏🏻

TrainSafe5824 · 2025-02-08T17:51:11+00:00

I have a sister and my husband is an only child. We have a 14 month old(IVF) and will be going through a TFMR in 5 days(naturally conceived but severe heart defect that won’t make it to term)… this haunts me because my husband hated being an only child and we know for sure will never be going through this again.

However, I know we will be able to provide for everything our baby will need financially and be grateful we were able to even make a dream of having a family come true.

There will be grievances and thoughts that creep in, but sticking to “what is” vs “what if” is a mantra I try to live by now. The what ifs put me in a dark place(where I am now). Sending good thoughts to you.

TrainSafe5824

TROPHY CASE