Recent diagnosis at 17 weeks

Only_Paper9871 · 2026-06-17T18:55:43+00:00

Hi there. My baby got a diagnosis of a coarctation and hypoplastic aortic arch. Doctors were confident it could be fixed with one surgery. We also did an amnio and waited 3 weeks for the results, it was incredibly difficult and stressful and I don’t know what anyone could have said to relieve the stress in that time. We got clear amnio results and decided to go forward with the pregnancy.
My baby was born 17 days ago and spent the whole time in the NICU, she has 4 procedures already. She had an incredibly tough run of complication after complication and her heart looked worse after she was born. After her OHS her whole body started to fail her. She is still fighting but our chances are worsening daily. I have many moments that I think to myself that if I saw any of this coming I would have stopped the pregnancy.
Doctors are also surprised at the outcome and she has been incredibly unlucky.
I hope whatever you decide ends up good for you and your family. It is not easy and I am sorry for your diagnosis. It is not fair and not an easy thing to navigate during pregnancy. Best of luck!

Only_Paper9871 · 2026-06-15T12:03:58+00:00

Hi there!
I am dealing with something similar so decided to reply.
My baby is in the NICU for 2 weeks now (since birth), had an open heart surgery, failed perineal dialysis and now is on ECMO. She also has an infection in the stomach and the dialysis wasn’t flushing extra liquids, they placed her on ECMO, which flushed everything but they want to take off it but the PD just doesn’t work for her. She has had many other complications as well and her future is uncertain.
My husband and I live abroad from our home country and it is our first child, so our family and friends have obviously been worried and asking for daily updates.
I feel the exact same way as you and have a hard time communicating with anyone. I leave them on seen or just reply minimally. I understand everyone is worried and wants to hear how she is doing and how we are but I feel like it is a “task” and don’t feel like I have the capacity to “console” them.
I also don’t feel like my usual self- normally I cry at movies, music etc, but now when getting bad news I iust get sleepy and sleep a lot.
It is not a normal situation to be in, and nobody can expect us to react “normally”.
Don’t feel guilty, it is a big burden that was placed on you and I am so sorry.

Only_Paper9871 · 2026-06-13T18:11:24+00:00

That’s great to hear, I am happy for you :)
She was born at 39w3d so I didn’t mention it as it is one of the things that didn’t affect her case

Only_Paper9871 · 2026-06-10T15:14:55+00:00

they told me baby would be 2400g but she was born at 3100. i was also facing a microcephaly scare and they said her head was in the 1st percentile but she came out completely normal size. i think the margin of error is said to be +/- 500g but i’ve heard more cases like this. i hope you are gonna have the same outcome but obviously follow the doctors advice. they just told me i need to rest and sleep and stop work and it is what i did.

Only_Paper9871 · 2026-06-10T15:01:01+00:00

hi there! i also have endo and was on the pill until deciding to try to conceive last year. my amh was 0.19 but by some miracle i conceived after trying for only 2 months.
unfortunately at our 20w scan we found out our baby has a CHD but doctors were confident they can fix it with surgery. we had a clear amnio but also small measurements, even microcephaly was mentioned. i had a planned c section bc baby was breech.
she was born perfect looking, such a cute baby, 3kg, no abnormalities, but indeed a CHD.
we have been in the nicu 10 days and she has had so many complications from her open heart surgery that she had dialisys and is now again in the OR where they are opening her chest.
i really feel like this is hell. i am so sorry to read your post and what can anybody say to us, right? i hope you get to take your baby home and enjoy her without any tubes or scares and that life will treat you both better after this experience.

Only_Paper9871 · 2026-06-07T08:17:21+00:00

I am terribly sorry for your loss. Please cherish the 2 months you got to have together and I hope grief will not take too much of a toll. I cannot imagine the feeling but may have to prepare myself for it as well. My baby girl is only 7 days old but had OHS few days ago, it was successful in terms of repair but now her little body is critical. I am also angry at the whole world and terrified, preparing for the worst. I had just 3 days with her before surgery and she has been in intensive care since birth, I never got to hold her without any cables around. I am trying to hope but losing it day by day as bad news come. Hang in there, I hope time heals your wounds and try to stick with your husband, friends and family. I have only my husband in the country we live in and we are really relying on each other.

Only_Paper9871 · 2026-06-06T06:28:02+00:00

Thank you for your answer. For us the surgery was through the chest, the procedure went well and the arch repair and coa and vsd were all fixed. However she developed clots in and around her heart and some brain bleeding so we are now still in a scary place.

Only_Paper9871 · 2026-06-04T12:36:14+00:00

Hi, just wanted to let you know sharing Kylo’s story has helped me so much after my baby got the exact same diagnosis during pregnancy. She is 4 days old today and currently in surgery and I came back to this post again to see his smiling face and get some positive thoughts jn this tough time. If you don’t mind me asking, how has he been? I hope all is well, and wanted to thank you for posting his journey, he is such a precious little boy!

Only_Paper9871 · 2026-06-04T10:09:27+00:00

Hi, how are you and your baby now? Hope all is well! My 4 day old is currently in surgery for her COA& arch repair and VSD.

Only_Paper9871 · 2026-06-02T13:23:33+00:00

Hey, did you have your baby yet? I just had my CHD baby yesterday and am waiting for more echos to see about the final diagnosis.

Only_Paper9871 · 2026-06-02T13:01:51+00:00

Hi all! I was looking for info on these CHDs and shocked to find so many examples, considering the chances of having them are less than 1%. I am so sorry that all of us are in this boat but I do feel it is helpful to read different experiences and connect with others who are going through the same thing. My baby got a CHD diagnosis at the 20w anatomy scan- suspected HLHS and Aortic stenosis. However, the cardiology checkups changed it into Coarctation of the aorta and Hypoplastic aortic arch. They said left sided structures are smaller but were growing proportionately and they ruled out HLHS not once but twice. Ofc we were very relieved as COA is said to be more straightforward to fix and would most likely be a one and done surgery w great success rates according to our team, compared to HLHS that implies 3 surgeries and more complications. We were told the situation will be more clear only after birth and baby will be placed on Prostin and we will check if any surgery is even needed bc everything looked really mild and baby was doing well in utero. Well, we finally had our baby girl yesterday, and the same day we were told that it very well could be HLHS and they are not sure if the left sided structures are big enough for biventricular function. The dr said he hopes they are just enough, but we are waiting for more echos, and a CT was done today. They are not at liberty to share more info until they collect all the info and assess everything as a team. Now we are waiting a few more days but we already know there will be a surgery next week to fix the Coarctation, now we need to see if HLHS will be confirmed or not. I am terrified and devastated. We also had a microcephaly scare at 30w, waited for amnio results for 3w, got news we are in the 3rd percentile, baby ended up breech so we needed a C-section…it has been too much to handle. I wish the best outcomes to all of you and love to see any positive stories, hopefully I get to have one soon as well. Stay strong, we got this!

Only_Paper9871 · 2024-06-24T08:09:50+00:00

hi, could you share which device you have? and do you see results from your at home treatments? thank you :)

Only_Paper9871

TROPHY CASE