A Sensitive Topic

Warning: I am touching on a controversial topic.  I am trying very hard to share my feelings but also be respectful.

One of the things I like to do is to monitor the “stats” of my blog- how many views, number of visitors, search terms, where people link my blog.  It makes me feel heard.  I am amazed seeing how far my blog reaches (hello South Africa, Montenegro and Finland!).  And sometimes I stumble on other blogs I want to follow.

There is one site that links to my blog that I can’t see- it’s a closed group on baby center for those who have terminated a pregnancy for Down Syndrome.   I cannot see what they’ve written about my blog, but I do know it falls under the heading ”the mom who chose to carry her t21 pregnancy to term and the result.”  I am not here to pass judgment on women who choose to terminate and women who choose to continue- whether it be a baby with Down Syndrome or average chromosomes, whether she be a healthy baby or one that will be born sick, if even alive.  I am not here to make anyone feel bad about the decisions they make.  I recognize I cannot possibly understand other people’s circumstances, and so I support women in their own decisions about their bodies and their families.

But I hope no one reads this blog and thinks- well, that’s too hard, so I might as well save myself the heartache and just terminate.

This blog tells the story that not every pregnancy turns out the way you would think.  Accepting a Down Syndrome diagnosis did not give me a take home baby.  But choosing to terminate might have ended a pregnancy that would have ended in health.

People can terminate their pregnancy, whether it be complicated by Down Syndrome or not.  That is there personal choice; I have my own personal views.  There are things I would hope I would do in my own life when faced with certain circumstances.  I also recognize I can’t know what decisions I would make until I am faced with them.  However, my professional and political views are simple- support women throughout their life cycle, in whatever way they need.

If there were a woman in this online group who was my patient, I would care for her as gently as I would any other woman.  In fact, I have cared for women who have terminated pregnancies with Down Syndrome.  I want this group to know that their choice was hard, that I do not judge them.

Though I do want to share a few thoughts with these women.  To the women of that group who have read my blog:  Please do not use my baby’s story as justification.  I don’t want Mabel to be anyone’s reason she uses in choosing to terminate her pregnancy.  You had your reasons, and I am sure they were good ones.  Since you are in an online support group for terminating, I can tell you are struggling with your decision.  You were faced with two impossible choices: terminating a pregnancy and continuing one when you are unready. You made the best decision you could with the information you had at the time.  But please leave Mabel out of it.  I made the difficult choice to carry her and give her the chance, understanding my risk of losing her.  She deserved every second of the six hours she lived.  Despite my heartache, I would do it again, even knowing the outcome.

Choice

Disclaimer: this post is a little political.  It may rub you the wrong way or you may holler support my way.  Regardless of which way it is, I hope we can still be friends.

 

I am pro-choice.  You don’t hear that a lot in my world.  My new world, at least.  In the Down Syndrome community, there is much talk about how awful it is that so many of those pregnancies diagnosed with Down Syndrome are terminated.  And I AGREE.  It is awful.  Down Syndrome can be such a livable, enjoyable diagnosis for families.  Not once did I ever imagine I would find myself preparing to raise a child with Down Syndrome, but it is what life has handed to me and I accept.  I have made choices in life (like purposefully trying to start a family) and I accept the consequences- trisomies, failing kidneys and all.  I am lucky in that I have the resources and knowledge to make those choices.  There are many women out there whose circumstances are truly unknowable to me and so I believe I can not judge.

 

I am pro-choice, but I am also pro-life.  I chose life for my baby.  And I appreciate that about my world.  I had the choice and I chose love and acceptance, blindly- because I could not have imagined what that choice would mean these months down the road.

 

I saw a patient today who was 14 weeks pregnant.  She had had an abnormal first trimester screening- based on an ultrasound and bloodwork, she was given a 1:170 chance of having a baby with Down Syndrome.     Anything higher than 1:200 is considered “abnormal” or “high risk.”  She opted for cell free DNA testing (the latest blood test that is highly accurate), which confirmed her baby had “normal” chromosomes.  She chatted on about how awful it was to go through that and thank god everything came out ok.  I wanted to ask her- what if it didn’t?  What would you have done?  Would it have been so awful?  Now I know I have had my struggles adjusting- as almost all parents who first learn of the diagnosis do.  It’s not fair of me to place this judgement- she didn’t know my situation and she didn’t face a similar one herself.  We often don’t know what our choices would be until we are forced to make them.

 

I had always thought (and even voiced) that politically I held one view and personally I held another view regarding termination.  I am proud that when forced to choose, I lived up to my beliefs.  I went with one patient and literally held her hand during a termination of a potentially healthy baby, while I, visibly pregnant, had made the choice to carry and care for one not so healthy.  There are many reasons people choose termination and my hope is that we can one day help remedy those circumstances (education, access to healthcare, finances, etc) that make it difficult to choose life.  I hope that we always have the choice but I hope that in the future, the choice is easy.

 

Sometimes I forget my child has Down Syndrome.   And I only really remember when thinking about any undiagnosed health conditions that may be present after birth, complicating our baby’s already complex life.  My first thoughts about Down Syndrome used to be a characteristic look and intellectual impairment.  And I think that’s typical of most people.  Those first thoughts often guide people in their decisions about terminating a pregnancy.  I now see how small those characteristics are in the big picture.  Now I think, health problems.  There is no perfect baby out there.  Some “imperfections” are just more knowable in advance.  I hope that over time, we (including me) all become more accepting of different “imperfections” so that choosing to continue a pregnancy based on Down Syndrome alone is easy.

 

All this, before I have even met my baby.