Friday, July 11, 2014

Would I Test for Down Syndrome Again?

One of the first things someone asks me when they find out Ben has Down syndrome is, "Did you know?".  The answer to that is...kind of.  We had a pretty good idea that Ben had Down syndrome based on the results of a newer test called MaterniT21.  The test was 99% accurate, only 9/10th's less than an Amnio, but because it was so new and we had no soft markers on our ultrasounds the doctor's were skeptical.  This is often followed by people with the comment, "I didn't take the test because I didn't care whether he/she had it or not.".

Mark and I are planning on trying for baby #2 soon.  Even though the thought of pregnancy, which I originally thought was going to be sunshine and rainbows, makes me want to crawl into a deep, dark hole, I am excited for the idea of this!  My pregnancy with Ben was pretty stressful.  There were a lot of life changes I was adjusting too, a new house to move into, a newer job I was still getting used to, and the at the time ominous thought that my baby might have DS and the multitude of doctor appointments that go with that.  With all that behind me, I am hoping this pregnancy is a little different.  However, with the thought of getting pregnant as well as the knowledge that having another baby with Down syndrome is very possible at my age, the question of "Would I test for Down syndrome again?" keeps haunting my thoughts.

There was a story I read today in one of the Down syndrome forums that really brought things home for me on this topic.  This mama had given birth to her beautiful baby boy just six weeks ago in her small, hometown hospital.  Her little boy, unbeknownst to her, had a little extra in the form of an additional 21st chromosome.  He also, much like many of Benny's chromosomal brothers and sisters, had a lot of the health problems at birth that are associated with Down syndrome.  Her little boy wasn't doing so well and needed to be instantly transported to a larger, more equipped hospital.  He had a rough go of it, and almost didn't make it needing to be intubated on the way.  This breaks my heart.  I cry just typing it now.  I thank God that this little fighter made it and I am happy to say he is doing amazing!  There have been a lot of losses of beautiful babies in the Down syndrome community lately, which have been affecting me to a greater extent than I would have ever thought.  I cry for all these babies, and I celebrate the ones that make it just as strongly.

My delivery with Benny was stressful, but we were prepared.  I was aware of all of the problems associated with giving birth to a baby with Down syndrome.  I was prepared for all the potential health risks Benny could experience upon birth.  My doctors were prepared.  The hospital I chose to give birth in, with a reputable NICU, was prepared.  We were prepared, and when they did indeed take Benny down to that NICU it was still hard.  It was hard, but not as hard as the horrific outcome if we wouldn't have been prepared.

Another thing I was prepared for was the fact that my world was potentially about to change.  I have read so many blogs from so many amazing Mamas and Daddies about the grief and loss they felt upon the birth of their beautiful children.  Upon the arrival of their little loves, they experienced a grieving for the child they thought they were having as opposed to being able to celebrate the child they have.  I understand this all too well.  I, too, went through this same grieving process.  The difference was that I was still pregnant when I went through it.  When the doctor, moments after I gave birth, confirmed that Benjamin had Down syndrome, I was just relieved that I finally knew.  I had already gone through my grieving, my bargaining, and all my tears.  I was prepared mentally for the arrival of my beautiful little man, and I couldn't have been happier.

When I think about all of this, I know my answer.  I will test.  I will take the in-evasive MaterniT21 blood test again to test whether or not my baby has Down syndrome.  It's not because I "care" whether or not he/she would have it.  It's not because I would contemplate my choice of whether or not to have my baby.  It is simply because I want to do what's best for my baby.  I want to have everything prepared, including my head, to the best of my ability.

So, friends, there's my answer if anyone cares.  Yes, I will test again.  If my baby does have that extra chromosome of cuteness just like his/her older brother, then I will rejoice in the fact that God has blessed me again.  And...I will be prepared.

The answer might be different for you, and that's ok too. xoxo

1 comment:

  1. Hi Jamie! My baby girl was diagnosed at birth. It was a surprise to everyone else, but I had mommy-intuition throughout my pregnancy and had prepared myself. I had a very difficult pregnancy, and was monitored very closely because they found a bright spot on her heart at 12 week ultrasound. If my dr suspected DS she never hinted at it, even when her growth fell to 11%. Knowing what I know now, and having experienced my baby being rushed to the NICU I am pretty certain I,too, would choose to be tested as well if there was ever a "next time". Both for peace of mind and so that I could be prepared at birth for what might be to come.
    Your little guy is the cutest, and I wish you all the best in the future!


Would love to hear your thought, comments, advice, or emotional outbursts!

-xoxo Jamie