Wednesday, 28 November 2012

• What Would You Do If Your Unborn Baby MIGHT Have Down Syndrome?

  
  I was really excited for my 18-week ultrasound, this was the big one. Where they measure the baby’s limbs and head and fluid around them and where you get to find out the biggest question: boy or girl. As soon as we had begun, I felt the doctor’s energy change; she became more serious and spent way too much time around my baby’s head. She then left the room for a minute, just long enough for my husband and I to stare at each other, knowing something was off but unwilling to acknowledge it with words. The doctor came back in moments later, with my chart in hand and looked at us.

  The baby had fluid on her brain, which by itself would not have been a shocking issue, except that I had failed the AFP test, the blood test that measures levels of a certain protein. Now, if I had just failed the AFP test, that was not a big issue either, considering the strong chance for false positives. But these tests together were what they called the double markers for Down syndrome. 

  The room was tilting and I sat stunned as the doctor threw percentages at me that were supposed to make me feel better, but really just scared the shit out of me more. They said that I had a better chance to win the lottery than get a baby with down syndrome. This was supposed to make me feel better. Wait! I choose lottery? Hello? I was given packets of information and a business card of the neonatal specialist who would do, if I so chose, my Amnio. The test that I said, when I got pregnant at 35 (the cusp of what had become the elderly years in pregnancy), I would take ONLY if something came up. Well, something came up.

  Fine. I'd get an Amnio, which pulls amniotic fluid from the baby’s airspace to be laid out so that scientists can see all the chromosomes and if chromosome number 21 has a clinger or what we joked has “a 3^rd wheel” (chromosomes are supposed to come in pairs) then we go from there. Fine. No news is good news. Wait to find out THEN worry.

  However, I was almost 19 weeks pregnant. I had another week until I could get into the specialist, then another week for the Amnio, then 2 weeks for results. Which, if all turned out to be fine, then no biggie, except, that if she came back with a positive, we had to make a decision about what we would do.

  Would we go ahead with the pregnancy or would we terminate?

  This was a ridiculously easy answer for me before I became pregnant. A no-brainer before I actually received this news. I would stand in front of anyone and preach what I learned in kindergarten, “You get what you get and you don’t get upset.” But that was BEFORE it happened to me. I was shocked that I would even take a second to think this through. But I did. I did not know what I wanted to do. The next couple of weeks proved to be the most challenging. Aside from the physical difficulty (to say this was a hard pregnancy to begin with would be an understatement), the mental and emotional toll it took on me could not be anticipated and I did this with a 2-year-old son at home and I was stumped.

  I would stare at her Ultrasound picture, desperately trying to “see” the Down syndrome. I would hold it up against my son’s ultrasound picture and try to compare them, but my son looked way more Down syndromy than she did in the pictures.

  I had to figure out how this would affect our family and that was difficult, because if she did come back positive for Down's then there was no way to gauge how severe it would be. This would have helped me. Would she be in a wheelchair, never able to walk, to make a connection with anyone or would she be fully functional and live a happy, loving life, while bringing joy and tolerance to all?

  Was it a blessing in disguise? Did God send her to me that way because I’m special enough to be chosen as her caretaker? Or was this a challenge I was not up to? Our whole family would change. My son would suffer. Our home would be all about her and our relationships would be thrown to the wayside. Could I be that mom?

  It was never about love. I loved her the moment I knew she was there, no matter what. But, was this a world we could enter? Is a special needs child God’s unrecognized special gift or is it a glitch in the reproductive system?

  I was so scared that I couldn’t be that selfless. Or was it selfish? Yes, what if she was born and raised tolerance and understanding of the people around us and grew up to be a fully functioning child with Down's? But, what if she was born with an extreme case and was to live her life in a wheelchair? What if she was unable to ever walk or read? What if she felt pain? Is that a life I want my baby girl to live? Would I be able to feel good about myself bringing her into the world knowing this, just because I wanted a baby girl? Or because I felt it might be wrong to terminate? I didn’t know.

  The thirteen days after my Amnio seemed to last forever. Maybe it was the month leading up to it, with the tests and pictures and specialists analyzing my womb. We finally got the call. All chromosomes were normal.

  My knees hit the ground. I cried without tears. The 6 weeks of tension and fear released into a purging of mournful, primal sounds.

  I had my answer.

  I was more than relieved to not have to make a choice. I honestly was unsure of what I would do. For some, there would be no choice. I applaud those people with a standing ovation. I honor what a truly better human they are than me.

  I am so grateful to have those kinds of people in this world and I truly believe they are the chosen caretakers of these very special children.

  Maybe I would have risen to the occasion. I would like to think that I would have. But, I’ve got to be honest; I’m glad that I didn’t have to find out.

  I believe that everything happens for a reason, and this was the first time where I couldn’t understand that reason. I think it just might be bigger than I am.

  But, I do know that things are exactly as they are supposed to be. I do know, that I am blessed. :)

   
  
  Have you had a similar experience? Are you one of the "chosen" parents? Have you thought about what you would do if faced with the same situation?

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