by Melissa Newbanks
On March 6, 2015, our sweet baby boy Kalvin was born! He was healthy; 8 pounds, 8 ounces at three weeks early! However, he soon became very sick and we did not know what was going on: over half of his blood volume was in his head and he was severely jaundiced.
We learned that he has “Hemophilia B severe,” also known as Factor 9 Deficiency. As first-time parents, we were terrified – we knew nothing about hemophilia or what it would mean to our baby and our family. We spent a total of three weeks at Children’s Hospital waiting for the blood in his head to be reabsorbed into his system and for his jaundice level to come down.
During the time in the hospital, we learned a lot about Hemophilia and treatment. We learned that his treatment is very manageable and that our little guy will have a very normal life. Kalvin’s treatment will be infusions of Factor 9, or Factor, every three to seven days to help prevent any bleeding, and additional infusions if he gets into an accident or has a muscle or joint bleed. We are upbeat and optimistic and know that it could be a lot worse!
We were shocked, however, when we learned about the cost of the medication. It is $1.00 per unit of factor. Our little guy was getting 1,000 unit infusions every 8 hours at the beginning. This means a 24-hour period cost us $3,000! Thank goodness we have insurance and qualified for the Medicaid buy-in program. We pay $120.00 a month for Medicaid and every medical expense from birth is covered, which is a huge relief; in the first month of his life the medical bills were over half a million dollars!
We are so lucky that Kalvin was born after the Affordable Care Act (ACA). We don’t have to worry about a lifetime limit on insurance, and we don’t have to be concerned with finding a different job with good insurance every two years to ensure that Kalvin gets his medication. Additionally, Kalvin will never have to worry about being denied health insurance because of his preexisting condition.
As parents, it is a relief that we can tell Kalvin that he can be whatever he wants to be when he grows up (except a professional football player), and know that it is true! We know that there will be times that our journey will feel rocky and challenging, but it won’t be because we are worried about how to pay for his treatment. I am confident this will be a wonderful journey, and I can’t wait to see where it takes our little family!