I wanted to do a different type post for Family History
Month, and in my mind merging 2 observances that are related was the perfect
way to do that. Remembering all of your
family, even the littlest ones who were never known, seemed appropriate.
My story is very personal, but like I said in my post, I
needed to include our daughter and my medical history in my tree. Hopefully, one day, someone will understand
the causes of my medical problems and will be able to act in time to save the
lives of a child and mother.
Briefly, I suffer from an unknown blood clotting
disorder. Unknown in that medical science
doesn’t know what it is, I don’t test positive for any of the known diseases,
but I present when pregnant like I have a clotting disorder. Makes trying to treat you difficult to say
the least. We are lucky, and thankful,
to have the 2 wonderful children that we do have. This is all we will have, and we have come to
terms with that since there are so many out there who don’t even have the
chance to have one.
With my first child I fell extremely ill at 25 weeks and thought it was the flu.
No, it wasn’t. I had developed HELLP Syndrome, class I under
the old classification system, and was lucky that I made it through. In the US the maternal mortality rate from
HELLP Syndrome is roughly 1%, but the infant rate is 10-60% depending on
gestational age and other factors. You
can read more at the Preeclampsia Foundation.
We decided to try again, and while I didn’t get as sick
there were still complications. After the stillbirth of our daughter we went
about with all the paperwork that comes with a death. I remember sitting on my bed when we got home
and looking at the death certificate. I
thought to myself that this was unusual wasn’t it? Was she really born? Some didn’t think so, some did, some wanted
me to stop dwelling and get on with my life.
But here I had this piece of paper from the government, so it did happen.
I wanted to write about it because these certificates can
be useful for future researchers. In
2003 the CDC redid their requirements for death and birth certificates which
included more information and provisions for fetal death. You can see their standards here.
Mine is a treasure trove of genealogical information for
future researchers. It lists:
·
Name of fetus, sex, date of delivery, facility,
city, county, and state· Complete name of mother, date of birth, state born, current address
· Complete name of father, date of birth, and state born
· Cause of death
· Age of gestation, weight, and length
· Doctors information
· Burial information and funeral home
· Education level of parents, occupation, race, number of prenatal visits, history of other pregnancies, and if parents are married
So much to learn from one piece of paper that is tucked away.
But that is not all. In the last decade more and more states are now issuing Certificates of Birth Resulting in Stillbirth. You can read this New York Times article on it from May 22, 2007. Another piece of genealogical information to add to you list.
Shannon,
ReplyDeleteMy grandfather's first wife died while she was pregnant with an infant daughter.
http://freepages.genealogy.rootsweb.ancestry.com/~robert/JohnAmbroseArvin.htm
Bob Arvin
Thanks for the family link. I have been hounding both sides of the family for any unusual blood disorders or pregnancy problems. So far no one has come forward with anything tangiable. I am a participant in a study being done at UCLA on the causes of HELLP to try and find a link and would like to have family tested and participating too.
ReplyDeleteDear Shannon, What a sad, sad story. You must be extremely strong to bear up under this tragedy. I am glad to hear that you have two healthy children. I have heard of HELLP syndrome, but I never knew anyone's particular story. It is generous of you to participate in the UCLA story. I hope they will find out the causes and a cure.
ReplyDeleteMariann, thanks for your comment. I too hope that there will be a break through one day. Fingers crossed.
ReplyDelete