Every second spent with baby Jason is a treasured one for new mom Jahnae Holt.
"Everything he does is cute to me", Jahnae Holt told Ivanhoe.
The past nine months have been anything but easy for Jahnae. She has a rare blood disorder called dysfibrinogenemia. Pregnancy increased her risk of blood clots and bleeding.
"Everyone clots when they get cut or something, but with my condition, I clot a lot faster," Jahnae said.
Jahnae's mom, grandmother and great-grandmother also had the disorder. Two of her uncles died from it. Doctors told Jahnae they would have to watch her carefully during pregnancy, especially after her first pregnancy was miscarried.
"Based on her family history, it's considered a serious disease in her," Amr Hanbali, M.D., a hematologist and oncologist at Henry Ford Hospital, explained.
More than a dozen doctors and nurses followed Jahnae during her high-risk pregnancy. She received daily injections of blood thinner and twice-a-week infusions of a drug to thicken her blood. If her blood was too thin, she could bleed out, too thick, and she could develop a dangerous clot. Jahnae also wasn't allowed to get an epidural during delivery.
"An epidural carries a high risk of bleeding, and the last thing we needed was bleeding in the spine," Angela Lambing, a nurse practitioner at the Hemophilia and Thrombosis Center at Henry Ford Hospital, said.
The specialized treatment plan came at a cost. Those daily injections Jahnae needed cost $100 each. The twice-a-week infusions cost $1600 per dose! Luckily, insurance and support programs helped out with most of the cost.
"It was a very big team approach. Everybody was involved in making sure she had everything she needed," Lambing said.
Most importantly, Jahnae had a healthy baby boy; an outcome she said was well worth it.
Jahnae's mother almost died giving birth to her. Jahnae said her baby is doing well and she will have him tested for the disorder one day. There are only about 200 to 300 families with the inherited type of this condition. There is also an acquired type of the disorder.
FOR MORE INFORMATION, PLEASE CONTACT:
Henry Ford Hematology/Oncology Clinic