A serious blood disorder threatened one woman's changes of motherhood

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

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.

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.

The specialized treatment plan came at a cost.  Those daily injections ran 100-dollars a pop.

The twice-a-week infusions: 16-hundred dollars a dose!

Luckily, insurance and support programs helped out with most of the cost.

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

More information on next page.
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BACKGROUND: Blood is the life-sustaining liquid flowing through our heart, capillaries, veins and arteries. It carries oxygen, nourishment, hormones, and many other essential components throughout our bodies; without it, we would die. Blood is a combination of liquids and solids. The liquid, also called plasma, is made up of salts, protein and water, while the solids are a mixture of red and white blood cells, and platelets. (SOURCE: http://www.nlm.nih.gov)

Blood platelets are colorless, sticky substances that work to defend the body if there is a sudden loss of blood. The platelets clot together with fibrinogen and other vitamins to stop the excessive blood from shedding. However, a rare blood disorder called dysfibrinogenemia can cause deadly complications to anyone suffering from it. (SOURCE: http://www.fi.edu/)

DYSFIBRINOGENEMIA: Often inherited from family members, this condition involves mutations in the gene controlling fibrinogen production. Abnormalities in the fibrinogen affect the way blood clots together in those suffering from this blood disorder; they either suffer from a blood clot deficiency, or they will clot excessively. Dysfibrinogenemia may increase the risk of forming blood clots within the veins (venous thrombosis) or cause a mild bleeding tendency.

WOMEN AT RISK: Women with dysfibrinogenemia may have more at stake with their reproductive system. Pregnant women with the blood disorder are often times unable to carry their pregnancy to full term. Pregnancy complications include first-trimester pregnancy loss, hemorrhage, placental abruption, and thrombosis. Mothers also put their own lives at risk during the birthing process. (SOURCE: http://www.ncbi.nlm.nih.gov)

In addition, women with dysfibrinogenemia could potentially be misdiagnosed by doctors. Due to the nature of the blood disorder, women suffering from it will usually have extremely heavy menstrual cycles and, in some instances, have an unnecessary hysterectomy when the underlying problem goes unidentified. (SOURCE: http://www.wrongdiagnosis.com)

MANAGEMENT: There are blood tests available for those who suspect they may have dysfibrinogenemia, and blood thinners or thickeners may be useful in managing the disorder.

 

FOR MORE INFORMATION, PLEASE CONTACT:
Henry Ford Hematology/Oncology Clinic
(313) 916-3790
http://www.henryford.com

(Information provided by Ivanhoe)