Newborn Screening Family Stories:
When we received the call that Danyella's newborn screening results were positive for sickle cell disease, we could not believe it. I had been tested; Danyella's father had been tested. The doctor back home had told us the results were normal! However, the test had been for sickle cell disease, not sickle trait. There had been a terrible miscommunication and our beautiful, new baby girl had sickle cell disease. It was a terrible shock.
This news greatly changed our whole family's life, with many doctors' appointments, medicines, medical bills and other increased expenses, and struggles with insurance companies. This development also kept us in Minnesota, away from our families and home in the Caribbean. We cannot consider going home for quite some time because the healthcare available there is not adequate for Danyella's needs. During the time since Danyella was born, I have had to take many deep breaths as we have tried to adjust to this new reality. This major change in how we saw our life story unfolding has taken time and prayer and trust that this is part of God's plan for her and our family.
Today, Danyella is a pretty, active, bright, and completely engaging little girl. She is thriving and we love her very much. If God gave Danyella the two S genes, He also made her very smart. To help manage her care, she is seen regularly in the Comprehensive Sickle Cell Disease Clinic at Children's Hospital. She has been followed by the clinic staff since her birth. We are very happy to see how healthy and happy she is. Although the first few months were really difficult as we adjusted to Danyella's diagnosis, we are still very grateful for the newborn screening test that identified Danyella's sickle cell disease before there were any complications.
We are still determined to go back home to the Caribbean someday. But when we do, my mission is to work to raise the quality of the healthcare system there. I am preparing for this by earning an advanced degree in public administration. When the time comes, I will be prepared to help change the healthcare system to better serve Danyella and others who live with sickle cell disease and other chronic illnesses.