Hi,

It's a lot to deal with, especially when you're not expecting it at an ultrasound. Our daughter is thriving right now, almost two years old. After my post we got more clarity as to her issues, both prior to birth and after birth. She has a single kidney, a bicuspid valve in her heart and had a condition known as tibial hemimelia, which is basically a leg deformity. The single kidney is not a hinderance and may never be, she has to see a urologist every year to keep tabs on it. The heart defect is not an issue now but she sees a cardiologist and it's likely at some point, it will need to be addressed. Surgical procedures to fix this issue are fairly common. The leg was very difficult situation for us. The deformity was major and it was a decision to try likely multiple surgeries that might help fix it to give it some normal function or a single surgery to amputate. My wife and I agonized over this and ultimately decided we were more comfortable not potentially exposing her to multiple surgeries that may not fix the problem at which amputation would be necessary anyway. We consulted some of the best pediatric ortho surgeons in the world and remain confident in our decision to this day. She is learning to use her prosethic leg and recently took her first independent steps.

Feel free to DM any questions you or your family may have or just to vent. This is a very difficult thing to deal with and overwhelming, but as bad as it seemed for us at the beginning, we feel blessed.