Lori
Preston, founding member of NBCA, learned of her inherited clotting
disorder during pregnancy:
“I remember the conversation as if it were yesterday. My mother shared
with me the painful recollection of the loss of her stillborn son she
delivered 14 months before she gave birth to me. We never talked about this
sad experience again, not until 1999.
In June of 1999, I was eight weeks pregnant and went to my obstetrician for
my first pregnancy check-up. Before seeing the doctor, I filled out a family
history form noting that my younger brother, my mother, and my maternal
grandmother all had blood clots. I discussed this medical finding with my
doctor, and she ordered DNA testing to see if I had a genetic predisposition
to clotting.
Two weeks passed, and I assumed that everything from my check-up was fine. I
was wrong. My doctor called and said my DNA lab results showed that I am
homozygous for a blood clotting condition called Factor V Leiden. I learned
that being homozygous, which means I inherited a defective gene from both my
mom and dad, puts me at an increased risk of having a blood clot.
Having this disorder along with being pregnant put me at "high risk."
Without medication, I had the possibility of developing clots that could
result in a miscarriage. I immediately met with a hematologist and
perinatalogist to discuss my disorder.
My medical management included daily injections of
low-molecular-weight-heparin during my pregnancy and post delivery.
Initially I was scared. I was concerned the heparin would harm the baby and
me. There seemed to be a general lack of information regarding this
disorder, and I felt isolated. My fear was further exacerbated when my
mother developed pulmonary embolisms, blood clots in the lungs, during my
pregnancy. Fortunately, she recovered and is now managed with Coumadin
therapy.
In order to become more knowledgeable about Factor V Leiden, I read my Dr.'s
notes, lab tests, and articles on the Internet. I had faith in my doctors
and my pregnancy went well. In January 2000, we were blessed with the birth
of our first daughter. I am truly grateful for my knowledge of Factor V
Leiden, and it has given me the opportunity to educate my extended family
regarding its affects. My mother, father, brother, daughters, and additional
family members have Factor V Leiden.
Since discovering my disorder, I am enjoying life, and I try to make smart
choices every day to decrease my risk of clotting. For example, I stay
hydrated, I exercise, I am not on birth control, and I don't smoke. We were
also blessed with birth of our second daughter, who was born in January
2007. Thanks to my experiences, I feel empowered to educate people,
particularly women, regarding thrombosis and thrombophilia. If nothing else,
I want my daughters to understand and accept the disorder, not to fear it.”