Parent Blog: Amanda McMillin
In their words
We first became involved with UI Stead Family Children's hospital prior to Eilidh's birth. Due to severe oligohydramnios – a deficiency in amniotic fluid – and fetal kidney abnormalities, specialists at other hospitals had informed us that she was unlikely to survive to her birth and, if born alive, that there was an even smaller possibility that she would live more than minutes to hours. When we declined to terminate the pregnancy we were repeatedly encouraged to sign off on comfort care, which we were not yet willing to do. The neonatologists at UI were the first doctors who wanted to try to save her life. We transferred all care to UI at about 27 weeks into the pregnancy.
Despite the earlier grim predictions, Eilidh was born alive and fighting at UI and never needed any respiratory support. She had a short 18-day stay in the neonatal intensive care unit (NICU) while the neonatologists and nephrologists monitored her kidneys to determine if she would need dialysis. Her kidney function stabilized and we were able to go home.
She has frequent labs and nephrology visits and, due to continued feeding difficulties related to her chronic kidney disease, we had a g-tube placed at UI when she was 6 months old. She has also had several illness-induced hospitalizations when her kidneys have had trouble keeping up. She will likely need dialysis/a kidney transplant within the next couple of years and we will be pursuing this at UI Stead Family Children’s Hospital with the help of our team.
We are very appreciative of the excellent care we have received at UI Stead Family Children’s Hospital. We feel very comfortable with Dr. Kathy Lee-Son managing Eilidh's care and feel very confident in the nephrology team's ability to handle the situation as our daughter medically moves closer to needing a kidney transplant/dialysis.