When was your VSD diagnosed? (Could my baby’s been caught sooner?)
For context, my infant daughter was diagnosed with a large VSD at 3.5 months old. This was not caught during my pregnancy anatomy scan, or in the NICU for after birth (she was there for unrelated reasons related to a stressful birth) and nothing was caught. I can understand why it was missed these two times.
However, when she was failing to gain weight due to her CHD, we began having weight check appointments every. single. week. with our pediatrician, and no heart murmur was ever heard, despite listening every week. Nothing was done except monitoring FTT and eventually fortified feeds. I even brought up her breathing difficulties (SOB, retractions) and the doctor didn’t seem concerned after evaluation. My daughter eventually got into the 0.04 percentile for weight and no work up was done.
It wasn’t until the retractions worsened, leading to an ER stay where a triage doctor also did not hear the murmur, when the final doctor we saw at the ER (thank goodness) listened to my daughter’s heart and his face dropped. He immediately tagged the murmur and said he thought it was most likely a VSD, followed by an echo which confirmed.
When our pediatrician listened to my LO’s heart after diagnosis, he “now heard it,” and made a comment that because the VSD was so large, the murmur was harder to hear. I feel incredibly guilty for my baby having to struggle so much before getting the care she needed (lasix and is set to have OHS repair next month). I just thought since we were going to the doctor so often, we were doing all we could. To be honest, as a layman with no medical experience, a heart condition was not even on my radar. My research was leading me to reflux, or possible GI issues because she also had those too. It has only been in hindsight I have been questioning this now that I know more about these classic CHD symptoms.
I’m curious if anyone had a similar story, if this is typical, or if I have the right to be upset and confused how this was not caught. Needless to say I’m going to look into finding a new pediatrician.