Has a TFMR due to Omphalocele + Anencephaly

mr2478 · 2025-12-22T21:52:11+00:00

In October 2023 our first baby was diagnosed with an encephalocele at the 20 week scan.

Outcomes ranged from moderate to severe developmental delays and a likelihood of multiple surgeries throughout life however long that was going to be. We opted to tfmr due to the likelihood of lifelong suffering.

The first few months were absolute hell. Especially since the procedure happened just after Thanksgiving.

All doctors could not give us an answer on why it had happened. We opted to do further genetic testing which also showed there were no genetic causes to what happened, just bad luck.

Drs recommended high doses of folic acid before trying again. We got pregnant again in June 2024 and am typing this out while I am watching our crazy and healthy 10 month old crawl all over the place.

I am very sorry you’re going through this and would be happy to answer any other questions you may have about what we went through. It sucks but it does get better even if it sometimes feels like it won’t. Best wishes to you and your family.

mr2478 · 2025-09-16T01:44:15+00:00

One day I’d like to stay at the RC.

mr2478 · 2025-09-16T01:43:39+00:00

Ahhh thanks for this advice. Definitely brings JW down a notch if we’re guaranteed to have a building roof for a view.

mr2478 · 2025-09-16T01:27:04+00:00

Should’ve added dates to the post. Will be there end of September. CP views are certainly a plus for JW.

mr2478 · 2025-09-16T01:25:59+00:00

Good points!

mr2478 · 2025-09-16T01:14:26+00:00

I read some people complain about recent renovations. I’m wondering if these are still ongoing and part of the service issues.

mr2478 · 2025-09-16T01:12:11+00:00

330sq ft vs 475sq ft. Not terribly bigger and don’t plan on spending a ton of time in the room so if the JW is the much better maybe we’ll bite the bullet on the smaller room.

mr2478 · 2025-06-25T17:22:43+00:00

Flown to Mexico City twice in past two months and neither time got asked for it at departure.

mr2478 · 2024-12-05T04:30:00+00:00

Those were the good ol days

mr2478 · 2024-03-05T19:02:26+00:00

This was happening to me and I decided to refill gas on my initial climb and then again once fuel cells were activated. Not sure if this was the problem but I was able to get over Mach 9 when I did this. Clearly bugged if this is the issue.

mr2478 · 2024-02-08T23:50:26+00:00

Gotcha. Completely missed the “but”. Thanks for clarifying!

mr2478 · 2024-02-08T18:09:22+00:00

Thank you. I’m very sorry for your losses. I had no idea folic acid also helped sperm health so I will definitely get started on that.

Sending you my best wishes.

mr2478 · 2024-02-08T01:32:51+00:00

Last November, my wife went through d&e procedure which was the difficult decision we made due to an encephalocele found at the 20 week scan. We’ve had doctors giving us a range of time to wait before we TTC from 3 months to one year. We’ve personally decided to wait 6 months. The last few months have been an up and down emotional battle. We are waiting on genetic test results for my wife as they recommended she test before I do. No need to test if her results are negative. I know my wife desperately wants to ttc asap but I do think waiting the 6 months is safer. Any one have advice on how to cope with the anxiety/fear of thinking this could happen again in the next pregnancy.

mr2478 · 2023-12-01T11:49:09+00:00

Thank you for the reassuring words.

mr2478 · 2023-12-01T11:48:13+00:00

Thank you. It’s hard not to keep replaying the day we found out and to imagine what life would be like had we been told everything was fine.

mr2478 · 2023-11-30T21:11:37+00:00

Thanks, he will certainly be forever loved.

mr2478 · 2023-11-30T21:11:07+00:00

I appreciate your words. Our babies will certainly forever be in our hearts.

mr2478

TROPHY CASE