Blood disorder threatens chances of motherhood

November 22, 2011 4:55:46 AM PST
Dysfibrinogenemia is a disorder that causes patients to bleed or clot too much. The condition can be especially dangerous in pregnant women. It took a big team of doctors, a precise combination of drugs and a lot of money and resources to help one woman deliver a healthy baby boy.

Every second spent with Baby Jason is a treasured one for new mom Jahnae Holt.

"Everything he does is cute to me," said Holt.

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," said Holt.

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 she miscarried her first baby.

"Based on her family history, it's considered a serious disease in her," said Amr Hanbali, MD, hematologist/oncologist, Henry Ford Hospital.

More than a dozen doctors and nurses followed jahnae during her high-risk pregnancy. She received daily injections of a 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," said Angela Lambing, nurse Practitioner/coordinator, The Hemophilia and Thrombosis Center at Henry Ford Hospital.

The specialized treatment plan came at a cost. Those daily injections ran $100 a pop. The twice-a-week infusions: $1,600 a 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," said Lambing.

Most importantly, Jahnae had a healthy baby boy. An outcome she said was well worth it.

"It hasn't fully set in that this is my child," said Holt.

Jahnae's mother almost died when she gave 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.

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