SIOUX FALLS, S.D. (KELO) – Welcoming a new baby to the world is an exciting time. But that excitement can quickly turn to fear when your child’s health is a concern.
Lindsey and Ben Kuper welcomed their first child, Owen, on January 22, 2019. Days later, the couple was ready to head home as a family of three.
“He had a simple procedure and as we were leaving we noticed the incision site had a little bit of blood, but we just didn’t think that much of it, just thought it was normal. We went home that evening and woke up with him at 11 o’clock and it was bleeding profusely,” Lindsey said.
Owen was brought to the ER where his incision was glued and stitched closed to stop the bleeding.
But three days later the bleeding hadn’t stopped.
“We knew something was not right. So we came back to the ER and they ran some lab tests and noticed that his blood wasn’t clotting properly,” Lindsey said.
Owen was diagnosed with severe hemophilia.
“One of the first things I remember is I could see the fear in their eyes and I would’ve totally have had the same reaction if it would’ve been my child,” Dr. Daniel Callaway said.
Callaway says the life-threatening disease affects about 1 in 5,000 baby boys born every year in the U.S.
“There’s different forms but essentially it comes down to a missing component or missing protein that the body needs to form blood clots and be able to sort of maintain the normal balance. So people that have hemophilia tend to bleed very easily,” Callaway said.
He says family history is a predictor in about two-thirds of cases, but the rest occur without warning.
“I didn’t know that much about it. I knew it was a clotting disorder and as far as I knew, it was completely genetic so I was a bit surprised because no one, in either myself or my husband’s family has hemophilia,” Kuper said.
Doctors say there is no cure yet for hemophilia but there are effective treatments available.
Questions have now been replaced with knowledge as the family embarks on their new normal.
“We just know what to do and we know what to look out for and what’s serious versus what’s just normal for him,” Lindsey said.
Lindsey says a strong support system of family as well as others who share her son’s disease has made the journey a little easier.
Sanford Health is the only hemophilia treatment center in South Dakota.
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