My youngest child, Logan, has special needs in a completely different category from his brother. Logan’s now 5 and just started kindergarten.
Logan was born with a congenital birth defect: aortic stenosis, with a bicuspid valve, and secondary left ventricular hypertrophy. Basically, in layman’s terms, this means that the aorta is too narrow (less blood flow.) The valve’s 3 petals fused, so there’s only two, so blood leaks back into the ventricle. The ventricle then has to work harder to push the extra blood volume out – increasing muscle mass.
We were about to leave the hospital when he was born when it was discovered. He then spent a night in the NICU.
As an infant this greatly effected his growth. At one point he went from being in the tenth percentile to the negative third. That was scary. He needed to gain weight fast… We were trying to feed him avocado (pure fat.) Eventually, is weight evened out. He’s still small, and probably always will be, but he’s in the tenth percentile again, and continues to grow on his curve. He sweats a little more than other kids. He can’t play contact sports, so we’re trying to steer him to the non contact stuff, so he’s ready when the other kids start playing. His cardiologist appointments have been reduced down to once a year (in which he received an electrocardiogram and and echocardiogram) so he’s doing well for now.
He will definitely need surgery to correct the defect. The doctors will put in prosthetic parts replacing his aorta and valve completely. We’re looking at doing that in about 8 years. That’s just a guesstimate though. At one time, they said 22 years old, then it went down to 8 years old, and now they’re saying around 13.
I don’t really seem to have a problem with now, or life after surgery, but what truly scares me is the time on the table when the surgery comes. Living through that is my biggest fear.
For now though – he just gets a kick out of the medic-alert bracelet he “gets” to wear.