My son Hardus Scholtz was born at 38 weeks with a birth weight of 2.49 kg, healthy and nursing well. (He was the only one oF my 3 children that came home and did not end up in neonatal icu). He was the best behaved newborn, slept most of the time. But at 2 weeks he was struggling to hold his temp, my breathing monitor went off regularly and i was struggling to get him to feed. He was just not thriving, lethargic most of the time and the pediatrician was worried that my breastmilk might be the problem.
Finally at 6 weeks he was admitted to icu, with a weight of only 1.9 kg and very #lethargic, Much test where run and finally he was diagnosed with a #Ureacycle disorder but one of the unknown ones. Hardus has a rough first year, he had milestone delays and we where in and out of the hospital. ( honestly i did not think he would see his first birthday and if he did we where not sure what neurological damage there would be).
Hardus is now a healthy 7 and a half year old but, very naughty and thriving.
He has many challenges, especially when he gets tired and his #ammonia levels go up. He still makes use of all his special milk and so forth. The medical aid still does not cover his illness but i do get them to cover some of his medication with an ex gratia grant but that normally takes several months and is only approved for 6 months at a time. Hardus is also much smaller than his peers but I am extremely grateful that he is able to live a normal live given all the circumstances around his