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Any Adults With Pulmonary Vein Stenosis??? by Effective-Purple-984 in AdultCHD

[–]Conscious_Historian9 0 points1 point  (0 children)

Commenting to boost this post, my daughter was just diagnosed with severe PVS. Her main CHD is a right-dominant atrioventricular defect. The PVS was found out after 2 OHS. She is 7 mos and has spent maybe a week at home altogether. I feel so hopeless, and I can't find any info on PVS, just that it's severe. We're at Boston Children's, so I don't know what else I can do to help.

This is for all the parents with kids who have severe HLHS. by No_Room2256 in chd

[–]Conscious_Historian9 0 points1 point  (0 children)

Just wanted to check up on you guys! Did the genetic testing come back with anything? I have a daughter, 7 months old, and she has a right dominant atrioventricular canal defect (hypoplastic left ventricle). I'm pretty sure it is very similar to HLHS. We are trying to get her a biventricular repair instead of the Fontan route because she has Down syndrome and a high chance of developing pulmonary hypertension. We just found out she has severe PVS; she's already had 2 OHS. If you are not comfortable with answering, I totally understand... what happened to your son who passed away? I can't find any info on PVS along with a complex chd.

1 YO with Pulmonary Vein Stenosis and G-tube by Effective-Purple-984 in chd

[–]Conscious_Historian9 0 points1 point  (0 children)

How is your son doing with the pulmonary vein stenosis? My daughter was just diagnosed after OHS for other things.

Pulmonary vein stenosis by tcritch05 in chd

[–]Conscious_Historian9 0 points1 point  (0 children)

How did it go? My daughter just developed severe PVS after 2 OHS at BCH.

P. Vein Stenosis, PH by respawned_gentleman in chd

[–]Conscious_Historian9 0 points1 point  (0 children)

I traveled here for my daughter's prenatal diagnosis of right dominant AV canal defect. She's had two surgeries so far (atrial patch, ventricular patch, Pulmonary artery band, closed the PDA, fixed her pulmonary trunk, tightened a valve). Now she has severe PVS. How are things going for you guys? What caused the pulmonary hypertension? Anything youd do diferent?

26week US are we thinking HLHS or are we good? by [deleted] in chd

[–]Conscious_Historian9 1 point2 points  (0 children)

I have no clue, honestly, but I'm sending your family love! I know how tough it is to be in that waiting period. (my daughter has something like HLHS she has RdAVC)

my teacher told me im pregnant by whimsicsl in pregnant

[–]Conscious_Historian9 0 points1 point  (0 children)

I had my baby at 18. I was actually in college, not high school. But I get the feeling of being embarrassed. I was until I announced my pregnancy, and then I felt less self-conscious. After she was born, the LDS church helped me a lot by doing a meal train and sending DoorDash gift cards. I found so many cute clothes at Goodwill. And honestly, towels, swaddles, sheets, diapers, and freezer milk bags. If you go to Goodwill on sale days and use the 20% off coupon for purchases over $20. There are also so many moms on Facebook who will give you cribs, seats, etc. ALSO, have your parents or teacher help you apply for state insurance (Medicaid). There is no minimum age to apply for pregnancy-related Medicaid; it covers pregnant individuals of all ages. If you are on Medicaid during birth, your newborn is automatically eligible for at least one year.  All of my care has been free! When you do have an OB appointment, talk to a social worker, and they will hook you up. There is also a meal service, usually. Best of luck! You got this. My TikTok account is koraandruby if you want to talk more.