Thursday, October 27, 2011

From the Beginning

The story of our life has been a hectic one.  I wish I had begun blogging our experiences from the beginning, especially since I have yet to find any parents or families that have shared their own.  My hope is that I can create a story of Mailynas life that she can look back on to see & remember her great journey.  I also want to share our experience with parents who find themselves in our position & are looking for real life experience, rather than what doctors tell them about others.  Talking about her struggle is something that causes 3 major things for me.  The 1st is strength to push on & be the support system for Mailyna.  The 2nd is pain at remembering how tough my baby has to be, every single day.  The 3rd is vulnerability.  A lot of times, I can talk freely about our life in the most matter of fact way that some people don’t understand.  But for me, it’s a coping mechanism.  Its our life.  It’s the only thing that keeps me from bursting into tears.  The beginning of our story is a tough one for me & causes tears to well up, but here it is…

I found myself 19 & pregnant.  My longtime high school sweetheart & I were already living together & just “knew” we wanted to spend our lives together.  The pregnancy was unexpected, but welcomed with open arms.  I had horrible morning  (ALL DAY really) sickness the first 3 months that dropped my weight drastically; celebrated my 20th birthday; dealt with my great grandmother passing within days of my prepping to announce my news... but the kicker… a simple routine blood draw that showed something called the “beta trait”, which would change my life forever.

The trait isn’t really a big deal & doesn’t majorly affect the carrier.  In some instances, people could go about their whole lives with the trait & never know about it…  unless they decide to have children.  My then husband had to go for a blood test, only to find out that he too, was a carrier and they immediately sent us for genetic counseling.  We found ourselves driving all over the Bay Area to meet with this specialist & going for screenings & tests.  Ultimately I underwent an amniocentesis as soon as my doctors gave me the green light, roughly 4 months, so we could find out whether our baby would show any repercussions of its trait parents. 

Through out our genetic counseling, we were given odds.  There was a 25% chance that the baby would get both good genes & not inherit the trait at all.  There was a 50% chance that the baby would get the trait (one good from me, one bad from him & vice versa).  Then there was a 25% chance that we would both pass on the beta trait, resulting in the full disorder, Beta Thalassemia Major.  Its definitely a scary thought, but the odds (75%  vs  25% ) were in our favor.  I actually found an online article that sums it up exactly here.

Test results took 2-4 weeks or so.  All the while, this little girl was growing inside of me.  I was in my 5th month watching tv after work when I received the call that the baby inherited both traits.  I remember sobbing, alone in my apartment for hours.  We were called into the genetic counseling office again to discuss the outcome.  Turns out that not only does she have the blood disorder, it’s a rare form that meant she wouldn’t be able to make any red blood cells.  She would need regular blood transfusions and chelation therapy because of the iron overload.  It was a whirlwind of information thrown at my highly emotional, pregnant mind.  I dove head first into the internet to research everything I could find, as we met with the specialist & clinics here in the Bay that cared for the Beta Thal community.

Although we were given the option, we decided to continue the pregnancy.  This angel was growing inside of me & I loved her with all my heart.  We had a game plan for our little girl & after a full 12 hours of labor, a healthy baby girl, Mailyna Aurora entered my world & changed my life forever.

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