Heart Warrior Mama’s

Hi everyone, my little Violet has just turned 2 and has a 5-6mm atrial septal defect (9mm at birth) and a VSD of 1mm. She is currently seen under great ormond street hospital in London and we have been told it’s watch and wait as to if and when intervention is needed. I’m very aware that we are very fortunate to have gotten this far and intervention is not likely to happen until she is a few years older yet. I was just wondering if there was anyone whose little one was or is in a similar position and how they deal with the anxiety of it all. I’m constantly watching out for any sucking in breaking and keeping an eye on her weight etc. would be great to connect with other heart mamas😊 xx

My baby is almost 9 months with HLHS, has had 3 open heart surgeries and the Glenn failed so probably have to take it down. Any eles had this happen?

Hi mamas, My LO is still comfy and happy in the womb, but we know they'll need surgery after arrival (hopefully closer to 3-6 months old). This might be a long stretch here but... Does anyone have a story with a non-DS AVSD hole repair?

I had my little girl November 2023, she was fine for 12 days and then fell very ill (almost died) that’s when we found out about her multiple heart problems. (There’s more to the story but there was a lot of medical negligence)

Has anyone else been through something similar? How did/are you coping?

She has now had two surgery’s and is due to have another one at the end of this week, she’s also NG tube fed which is a lot on its own let alone everything else.

🤍

Im 24wks i found out at 22wks that my little girl has heart defects vsd pulmonary artersis and hole in heart anyone gone through similar feel so alone tryinf to stay strong and get mt head around it ftm and a single mama