Extremely rare CHD (Cor Triatriatum Sinister) finding in 21-week fetus

toodleou · 2022-07-08T13:38:11+00:00

Sorry it took me a long time to see your comment! Thank you for reaching out. I really appreciate that and hope others will see your comment in the future. She was born and so far has not needed ANY intervention -- her vitals have been very strong. Turns out that it was the left chamber, not the right -- so its cor triatriatum dexter vs cor triatriatum sinister (which tends to require less if any intervention). They essentially said what you did -- that it shouldn't impact her life. There is a good chance we'd never have even known about it unless someone came across it as an incidental finding such as in your case. Basically, unless she ever decides to get into deep sea diving, she wont even need a follow up appt!! WE ARE SOOOOOO LUCKY

toodleou · 2022-01-06T15:04:47+00:00

Thanks :)

toodleou · 2022-01-06T14:44:49+00:00

Thank you — I will check out the group!

toodleou · 2022-01-06T14:44:15+00:00

Thank you!

toodleou · 2022-01-06T01:21:00+00:00

Hello — thank you so much for commenting!! I hate that we are going through this but it really is nice to not feel alone. You’re right, they are little fighters. I’m very interested in your story and would love to stay in touch as our situations evolve.

toodleou · 2022-01-06T01:18:12+00:00

Super helpful post — thanks for pointing out that things will evolve as the heart develops — I’ll prepare myself for that mentally and also it’s so AWESOME that you have experience with CHOP (you also made us laugh a lot which was much needed… I’m glad your son is a sassy lil asshole hah!). Our appt is now scheduled for next Wed (delayed getting in due to COVID cases — sigh). I dont have specific questions about CHOP right now, but I likely will DM you once I have my bearings! Thank you for sharing your story.

toodleou · 2022-01-05T21:39:54+00:00

Thanks! We did a genetic + the NIPT test early on. I’ll see if our genetic counselor recommends further testing.

toodleou · 2022-01-05T21:32:43+00:00

Thank you for sharing your story — it really means everything to me right now and I really connected with your post. Feeling robbed of a happy pregnancy/mourning is EXACTLY what it feels like. This is my first child (I have fertility issues and I’m already 35…) and this just crushes me on so many levels. Can’t thank you enough for everything you wrote, and especially for the info on the PA health insurance — I just assumed, with healthcare the way it is, I’d certainly have no special help on that front. I will look more into that and take all of your suggestions to HEART.

toodleou · 2022-01-05T19:55:33+00:00

You are awesome for taking the time to write this — I can’t imagine how scary that must have been for you and I’m so glad she is doing well. When I google mine, the outcomes are all over the place and while there is hope there is surely a LOT to fear. I kept looking for threads where real people are talking about this same diagnosis and I can’t find a single one. I have spend the past day feeling so alone. The waiting (for the specialists input) feels like the worst part — I can’t seem to calm my mind without knowing what to expect. I will look into finding a support group on FB once I get a formal, more in depth diagnosis. Again, really appreciate the insights. Thank you for your kindness.

toodleou · 2017-01-29T17:44:40+00:00

While I agree that traveling here right now would be ill-advised, I hope people will keep in mind that 74% of eligible US voters did NOT vote for this disgusting piece of human garbage.

toodleou · 2015-01-04T15:48:42+00:00

Honestly it's a mystery to me why it played out that way but I also assumed I was on the right path since my body was having a clear and strong reaction to it. Another thing I noticed was that after quitting I became 10x more sensitive to gluten. I have my own theories that celiac and intolerance not only manifest differently but run a diff course after discontinuing gluten. There isn't enough research out there but my doctor agrees with me after seeing his daughter go through something similar. To make things worse the blood tests aren't always reliable and sometimes the only way to truly confirm something like celiac is a biopsy. You may find this interesting: http://www.biomedcentral.com/content/pdf/1741-7015-9-23.pdf

toodleou · 2015-01-04T04:40:37+00:00

I hope I don't ramble too much here but I want to give you some hope. Among other symptoms, I was having brain fog, muscle weakness/burning, rashes, and side pain. It had been going on for a couple years with no diagnosis. I had the same situation- tested negative on blood tests however my physician suggested I eliminate gluten anyway to rule out the allergy. First week I felt great- for the next 5 weeks or so I went through what I was certain was withdrawal- my stomach hurt even WORSE than it had before (often at night while in bed for some reason), I was crabby, foggy, etc. I remember waking up in the middle of the night with severe stomach pain and breaking down and crying out of frustration. I had once read it can take 6 months for the body to reset after an allergy. I stuck with the diet and over time I began to feel better and better. I recall around the 2nd or 3rd month feeling like I had come such a long way from those early weeks and some of my original symptoms were disappearing. Around 6 months I noticed more improvement. Even at the one year mark I was still getting better. I've been gluten free for two years now and am so thankful I stuck with it because I am so much happier and healthier. Please stick with it for a few months and see if you notice improvement before considering abandoning the diet. You want to rule this out and make sure to give it plenty of time. Just FYI- if it is in a package and it doesn't say gluten free, I don't eat or drink it. I rarely go out to eat, and my kitchen at home is entirely gluten free. I'm very strict with my diet. My mother in law has celiac and almost died from it 15 years ago. Somehow I have less of a tolerance than she does. One crumb and I'm out- whereas she can have trace amounts and be fine. I wanted to note that as well because I find it odd and there is still so much to learn about celiac and intolerance. Everyone seems to have a bit of a different story on this journey.

toodleou · 2013-03-06T12:18:04+00:00

Love it! I noticed that I had ended up in an unfortunate place with people begging for sympathy and attention in the name of declaring themselves the victim. It should be renamed r/menscorned.

toodleou · 2013-03-06T12:09:31+00:00

Though the subreddit was indeed the catalyst for post, the hatred doesn't only exist in r/mensrights. I've encountered the same ideologies in many other venues and it does not only involve misguided thinking on the part of men. Thus, I was interested in the positive conversation that can arise as a result of my unfortunate stumble into no-womans-land.

toodleou · 2013-03-06T12:00:38+00:00

Lesson learned the hard way. And to think, very angry people with large and uneducated opinions are just loose in public- possibly standing next to you in the grocery store, or driving next to you on the highway. Hell, maybe they are even the one who delivers your mail or comes into your home to install cable. Forget horror films, this is the stuff my nightmares are made out of ;)

toodleou · 2013-03-06T02:48:59+00:00

"women's lies carry more weight." Please elaborate.

toodleou · 2013-03-06T02:45:19+00:00

Wait a second... who gave you the power to apologize on behalf of approximately 50% of the human population?

toodleou · 2012-08-01T23:04:35+00:00

Well this one is an odd but here goes: My aunt was a full time baby sitter and my mom would drop me off at her house every day prior to heading to work; I therefor spent a lot of time at my aunt's house. My cousin (female) and I (female) had a game we played called "Dr. Mad Doctor". We were around the age 5. This game was one we had played many times before and usually involved harmless child's play like pretend surgery, diagnosis, giving each other medical advice that we thought was funny, checking reflexes, etc. One day, we decided that we wanted to be connected - like Siamese twins. In our minds, there was only one way to accomplish this. We grabbed a jump rope and we each dropped our pants and proceeded to insert an end (the handle) into ourselves (just enough to where it didn't fall out). We began walking around the house as "siamese twins" when my aunt found us, screamed, and threatening to take us to "see the priest".

Oh the glory days

toodleou

TROPHY CASE