A Kiss...Goodbye and Hello, Four!

Like any renowned celebrity, there's usually some sort of associated controversy that gets people's attention.  Bernie's no exception. But if you're paying attention, it really isn't much of a surprise. It's the spin that matters. And it's usually the spin that makes or breaks the amount of attention paid to a particular issue.

Our banner that's featured in the central area of the hospital connecting Mott Hospital to the rest of the University of Michigan Hospital will soon come down, if it has not already. Yeah, someone complained. Before you say, "Whaaaattt!?" and become angry with the hospital (because it IS a pretty awesome moment captured and we, Bernie fans, dig the photo) we need to give the issue some consideration. But I do give credit to the team for the edgy decision to post it in the first place! A teaching hospital can be a warm, caring, and professional environment!

A first lesson of training to work in the hospital setting is to maintain and respect patients' personal space.  It's really a matter of expectations.  Should parents expect that their son or daughter's caregivers will kiss him or her as part of the care plan? Will that nursing student think s/he should go kissing her little heart patient because the banner "says it's okay"? The average viewer cannot be expected to know that it's not just some random doctor kissing a random pigtailed, yummy little girl. It's an authentic moment captured within the confines of an established personal and professional relationship.  And that just confuses a lot of people! We respect the decision of the University to replace the photo.  But by golly are we going to try and get our hands on that old banner!

The good news is that they will print another banner with this image:

 And keep your eyes peeled! From what I understand, you will likely see this image adhered to the sides of buses around Ann Arbor as well. I am not sure how I am going to capture that on film. So one image we kiss goodbye and another we share with pride.

As part of Down syndrome awareness month, I feel compelled to comment on one of the latest bigger issues for those of us in the Down syndrome community. It has to do with the up and coming prenatal tests that are hitting the market in the next couple of months.  This new blood test will allow any pregnant woman, regardless of age, to be informed with 98% accuracy that she is carrying a baby with Down syndrome at approximately 8-9 weeks into the pregnancy. It samples the baby's free floating DNA in the mother's blood stream. As you may recall from earlier posts, of the small percentage of women who currently seek and receive a definitive diagnosis of Down syndrome, 90% opt to terminate the pregnancy.  This test, along with current trends in the data regarding the number of Ds births, has many people highly concerned. As Amy Julia Becker, the mother of Penny (who has Ds), states in a recent NY Times article:

 "It’s not the test that bothers me, nor the desire to prepare well for the birth of babies. What bothers me, and what hurts our family, is the perception, often reinforced by doctors, that a life with Down syndrome is not a life worth living, or that the burden such a child places upon a family and society is simply too great."

Furthermore, according to Dr. Brian Skotko, at one of his recent lectures regarding this testing, a large percentage of physicians (I can't recall the exact percent, but it's more than 2/3) are not comfortable delivering such a diagnosis. I suppose this could be for several reasons. Perhaps they have no positive associations with the condition. Sometimes the physical characteristics are not always obvious to make such a life-changing claim to a family. Perhaps doctors are overwhelmingly convinced that there are just too many potential medical complications. Whatever the reasons, if they aren't comfortable talking to you about it, it puzzles me how women will receive positive information about the condition. I feel fortunate, and part of what seems a considerable minority, to have received Bernie's diagnosis with a positive and realistic spin. Remember the concept of spin mentioned above? Super important here!

For those of you who have never received a life-changing diagnosis for your child, I suppose I can compare this early notification of a diagnosis of Down syndrome on some remote level to the feelings and challenges associated with parents announcing a baby's sex and name  prior to birth.  As much as a parent-to-be may think it's one more thing that's "done" to prepare for a birth, providing peace of mind, other issues can arise. If unsure or disenchanted, people think they can perhaps change your mind or freely object to your decision. They are willing to say things about the identity of your unborn child that they may otherwise never say. People can and will relentlessly provide you with feedback you may or may not want to hear. You have to decide how you will respond. Knowing ahead of time may not offer you the peace of mind you initially sought. You have to know who to tune out and who will be part of clarifying those decisions. And just as names evoke opinions, a diagnosis certainly opens the floodgates for discussion, some of which may or may not be informed or accurate. 

I may also add that on a personal level, having only a diagnosis to think about, instead of a baby to hold, in the days after Bernie's birth was very difficult.  A diagnosis without the physical presence of a baby dehumanized the condition to an extent and it would have been very easy to be overwhelmed by negative feelings based upon potential medical complications and clinical statistics relating to Down syndrome. Education is key. If anyone you love receives a Down syndrome diagnosis, you can encourage him or her to connect with a family who has a child with Down syndrome and get accurate, reliable information and support from a local or national Down syndrome agency.

It is nearly impossible to glean a positive emotional response, such as that evoked from viewing this photo, from the presentation of typically communicated clinical information at the time of diagnosis. So that's my job: to share the joy of her being. Over and over. At all ages and stages. We are fortunate to live in a country full of choices which are accompanied with blessings, challenges, and responsibility. In a world where the Down syndrome population is decreasing by as much as 49% (Skotko, 2010), all I can do is offer this face and tell you how thrilled and thankful I am that I was never persuaded to deny her existence just because of an extra chromosome.