Living With Conditions A Head Start and a Blessing
This family story was collected as a part of the Newborn Screening Family Education Program*, a program of Expecting Health, that is dedicated to developing opportunities for all families to learn about newborn screening.
I am a parent of a child with Sickle Cell. This is a disease that effects the red blood cells. It turns them into sickle-shaped cells that can cause blood clots, and as a result can cause an intense pain crisis. So as a parent receiving the news that my newborn has a life-long disease that will cause high levels of pain was devastating. We were literally at a lost for words.
With very little knowledge about the disease and a pamphlet in hand to educate us on possible scenarios my son would go through as he grows was the last thing we would imagine would happen on the day of his birth. Though he was born with Sickle Cell, we still felt blessed to have a healthy baby boy. The newborn screening was a huge help to prepare us for what he was up against in life. I’m grateful that we were able to get a head start on what we were going to face, because had we not known about this disease we would have been lost. Every child cries and as we know every newborn does not come with an instruction manual, but being able to educate ourselves about his disease was truly a blessing.
By Chadd W.
*This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of an award totaling $400,000 with 0 percentage financed with non-governmental sources. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS or the U.S. Government.