Wednesday, December 29, 2010

Inherited Danger? Fluke? My Experience with Blood Clots

Pregnancy and childbirth are two of the most exciting times in life. For some of us without access to our medical histories, however, there may be unexpected, and in some cases preventable, complications that potentially threaten the life of the mother and/or child.

During your first prenatal visit, doctors will typically ask you about your family history to check for a variety of conditions that would require more careful monitoring. Since I do not know half of my medical history, a large portion of my answers were blank. As far as I knew, my diabetes and maternal family history of Down syndrome were my only concerns. I anticipated a "normal" pregnancy and delivery.

Three days after I delivered my son, Trevor, earlier this year, I developed a blood clot that hemmoraged and required a surgical procedure to fix. Assuming the clot was just a fluke, I never researched it or suspected that perhaps there could be a genetic component. In my current pregnancy with my daughter, I again developed a blood clot right by the baby along with a condition called placenta previa. Curious as to whether this, too, was a fluke or perhaps something else had contributed to these clots, I googled blood clots and previa. Only a few risk factors were identified, of which genetics was the only possible listed predisposition that might explain my complications. (Other risk factors included history of cocaine use or cigarette smoking. I have never smoked a cigarette in my life, much less used cocaine. I did not have any of the other risk factors, either.)

If, by chance, there is a known history of blood clots in my paternal family, I could have warned the doctors and they could have taken extra precautions to prevent the first one from ever occurring much less hemmoraging. Once you develop one clot, I have been told that you remain more prone to developing additional clots - even those unrelated to pregnancy - in the future. Once you develop a blood clot that requires uterine surgery to correct, as mine did, you are also more prone to blood clots and previa in subsequent pregnancies. In worst case scenarios, both the mother's and baby's life is in jeopardy due to the risk of loosing a lot of blood quickly.

So far, I have had one healthy, happy baby. Until my daughter is viable, though, I may have to worry about how my little girl is doing and hope that she gets the necessary time to develop. If I hemmorage and it stops, my baby has a chance. If I hemmorage and it does not stop, my baby must be delivered, even if she is too immature to survive. Perhaps with access to my medical history, assuming that mine has a genetic component, this would never have happened in the first place and I would have more confidence that my children in the womb would be okay. Either way, this is just another example of why knowing our entire histories may help us and our kids stay healthy.

Update 1 - The previa is showing significant signs of improvement, and this blood clot has now completely resolved itself! Although I have been instructed to take it easy for my entire pregnancy to hopefully prevent another clot, the baby girl is in a much safer environment now and should be ok. (Thanks, Stephanie, for your thoughts.)

Update 2 - The previa eventually resolved completely. However, Lexi's growth percentiles dropped significantly and steadily. Another blood clot had gone undetected and hemmoraged during my induced labor. Due to her lack of proper growth in utero from these complications and the high risk of being stillborn, she was induced early and is now doing much better outside the womb.

Wednesday, December 22, 2010

Article in Vox Magazine - Anonymity Debate

Ending anonymous donation might help some but harm others

By Anna Gaynor
December 9, 2010

Kathleen LaBounty doesn’t know where her son got his dark blue eyes.
When she was 8 years old, LaBounty’s mother told her she was conceived by sperm donation. Not until she was a teen did she try to find out who her biological father is. She contacted the clinic but was told the files had been destroyed, so she began sending out letters to possible fathers. Six hundred letters later, the 28-year-old LaBounty still has not found him.

“I think a lot of people don’t understand because they see that we’re loved and we’re wanted, and what else could possibly be missing?” LaBounty says. “I think it’s very natural to wonder where you came from, your heritage, how are you similar to the person who helped create you.”

Now a research counselor at Baylor University in Waco, Texas (minor correction - actually at Baylor College of Medicine in Houston), LaBounty is a proud mother of an 8-month-old son, with a daughter on the way. Aside from doing research at the university, she has written extensively about her search on her blog Child of a Stranger. Through her blog, she has fought for the end of anonymous donations in the U.S. Not knowing her biological father has left LaBounty with many questions and no answers. On a practical level, she has no idea if she has a family history of cancer or heart disease. But there are personal, complicated reasons as well.
“I can see bits and pieces of my mom, but there’s so much of my face that I don’t recognize, like a stranger, and you want to know the other half of your face,” LaBounty says.

LaBounty and other kids resulting from sperm and egg donations have no easy answers. Just as many adopted children wonder about their biological parents, donor kids have questions beyond where their blue eyes come from.
Her attention was drawn to Missouri in 2009. State Representative Cynthia Davis (R-19) sought her advice on a bill that would give donor children the opportunity to find their biological parents. The controversial House Bill 355 would have ended anonymous donations, but it failed to come to a vote before the 2009 session was over. Alhough the bill is currently not scheduled for a hearing, it also would have allowed children at the age of 21 access to their genetic donors.

LaBounty says the current system’s priority is to protect the adults involved in the process, and the needs and well-being of the child seem to be at the bottom of the list.

Benefits of anonymity
Not everyone is happy with Davis’ bill. Marna Gatlin is the CEO and founder of Parents Via Egg Donation, a nonprofit organization based in Portland, Ore. It offers support and education to couples, families and parents who are choosing an egg donor. Gatlin started the organization after her own experience of conceiving a son with egg donation. She worries that making it mandatory to remove the donors’ anonymity could shrink the number of donations. However, Gatlin wishes she had been given the option to meet her egg donor.

“I’d just like to hug her and thank her because she has just given me an extraordinary gift,” Gatlin says.

The end of anonymity is not what bothered Gatlin most about Davis’ 2009 bill. It was the language. According to the bill, the donor parent would be required to be listed on the birth certificate alongside the names of the mother and father. Gatlin worries about placing such strong emphasis on the donor.

“I think folks who have not gone through this experience don’t understand how it feels for us to hear the fact that the baby we’ve carried and brought into the world is going to have somebody else as a parent,” Gatlin says.

She admits she gets irritated by the use of the term “donor mother” alone. Although her 10-year-old son knows how he was conceived, Gatlin wants him to know that parenthood goes beyond genetics — a real parent cares for and nurtures a child.

A choice versus a child’s right to know
LaBounty agrees. The man who raised her will always be her dad, but she adds that her biological father will always be more than just a donor to her. Unlike Gatlin, she supports the birth certificate provision because it prevents parents from misleading their children about their origins. LaBounty wants to prevent other donor kids from experiencing the pain of being unable to find their biological parents.

“I also just felt a lot of loss,” LaBounty says. “I felt (that)not just my biological father but the other half of my family had died. I really went through a grieving period.”

Gatlin thinks many parts of the system need to be changed, but she finds many state bills that are similar to Davis’ come from legislators who lack education about the process.

“This isn’t Star Trek,” Gatlin says. “It’s a beautiful thing. It’s a way for a woman to be able to carry a pregnancy and to be able to have her partner’s child, to have a baby you made out of love just as you would naturally, except that we have to use somebody else’s genetics.”A

Quick Updates

My 17th DNA test came back as negative last week, though I have gotten to the point that I am no longer surprised. In fact, I'd be much more astonished if I ever get a match. When I first began my journey, I truly - and naively - believed with each potential father or sister (no potential brothers yet) that I had located my family. Now, I assume that I haven't until I am proved otherwise. Nonetheless, I keep trying and I am about to begin my 18th DNA test very soon.

And, in terms of my own growing family, we are now 17 weeks pregnant with our little girl, Lexi Grace Johnson. Hopefully my son and daughter will some day meet the rest of their family, too.