Expecting to hear confirmation that my unborn child has Down Syndrome was one thing - actually hearing it was something altogether different. I've never felt grief on this level before. I wasn't grieving for the loss of a baby - my baby was very much still inside me and I had just started to feel some of her slight movements. I was grieving for what I had thought and dreamed my baby would one day be.
The Internet was full of information - the genetic abnormality caused an extra copy of the 21st chromosome to be created. Babies born with this Trisomy 21 will have mild to severe mental disability. Half of all babies born with Trisomy 21 are born with congenital heart defects/conditions. The life expectancy of an individual with Trisomy 21 is lower than that of a person without Trisomy 21. There is also a greater chance an individual with Trisomy 21 will develop Leukemia, which occurs early in life, and also Alzheimer's after age 35. Males born with Trisomy 21 are sterile, whereas females can reproduce, but have a very high rate of having a baby with Trisomy 21.
Wednesday came and Arty, my mom and I went to our appointment with the genetic counselor. We found out that she is not an employee of Dr. K - she is affiliated with one of the teaching universities in the area. She seemed nice enough upon meeting her, but it was clear that she has distanced herself from becoming too involved with the patients.
The G.C. took a lot of our information, like how old we are, what our ethnic backgrounds are, etc, then asked a lot of questions about our families and made sort of a family tree. It was during this time that I was reminded of Arty's cousin, a 2-year old boy with Down Syndrome who had passed away from a severe heart defect many years ago. (Surprisingly, I had forgotten all about hearing about him, but it was clear Arty had been thinking of him a lot lately.)
The G.C. then went on to tell us a lot of things about Down Syndrome - statistics and information we had already found on the Internet. She went on to describe how our baby would not look like us, but would look most like other children with Down Syndrome. That made me so sad at the time, because I really wanted her to have her Daddy's eyes, and his dimpled cheeks. I was hoping she'd have my mouth and nose. I felt those hopes fall away and be replaced with pictures of children I've seen with Down Syndrome.
She also stated that babies with DS have very low muscle tone and are usually very sedentary, moving their head, arms and legs very little. So now I had a vision of a baby that looked like someone else with a body like jello. After a good hour and a half of talking AT us, she threw in the piece de resistance - we had a few more weeks to decide if we wanted to terminate the pregnancy.
I had to get away from this woman - she was filling my mind with statistics and information anyone can get off the Internet. I had to wonder if she'd ever actually been in the same room with a person with DS. She brought nothing to the discussion about the joy a baby with DS can bring, she brought only her view as a person who has studied DS, but has never lived or even encountered it outside of a book. I know it is her job to make people aware that they have options - but the way it came about - (Ok, here are all the bad things about Down Syndrome, now, you should probably decide whether you want to keep this thing or not) - was quite callous.
Then the very last thing she told us was that if we didn't want to terminate, we could give the baby up for adoption. There are waiting lists of parents who want to adopt babies with DS. (Wait a minute... they are WAITING specifically for babies with DS??? They can't be all bad then, can they??)
As I look back at this, I wish I had never met that woman. I wish I had met up with our local support group (which was listed in the information we were handed at the end of our appointment, but which was never mentioned DURING the appointment.) and just skipped the genetic counseling meeting altogether. The only thing I took away from that appointment was that the "counselor" had a definite opinion about what parents should do when confronted with this diagnosis.
To me, our choice was easy - I would not harm my baby. My husband would have a slightly different opinion.
Subscribe to:
Post Comments (Atom)
ugh. I guess we can't always rely completely on the doctors eh? But you've always done what was best in your mind and heart. She just made it more confusing.
ReplyDeleteAs a genetic counselor, it is unfortunate to hear about your very negative experience with genetic counseling. It sounds as though this appointment was quite a while ago, but I am wondering if you ever considered providing feedback to your GC? While criticism is never easy to hear, I imagine that she might appreciate hearing your perception of the experience.
ReplyDeleteAs a new GC myself, I am still learning and growing with every patient encounter. I would much prefer to hear feedback directly, than make the same mistakes over and over again.
Had you been given the opportunity to provide feedback (either anonymously or not) following the appointment, do you think you would have? I'd love to hear your thoughts.
Allie Janson
http://herNaturehisNurture.com/
I think eventually (had I been asked) I would have provided feedback. I'm the type of person to stew over things and envision scenarios in my head until I know exactly what I want to say (otherwise, my emotions take over my thoughts.) I'm not sure whatever happened to this particular GC - I only know that she no longer provides counseling at Dr. K's office.
ReplyDeleteI do want to say that I'm sure her approach and view is very different than most GC's, and I do hope no one takes my negative experience and uses that as indication not to undergo genetic counseling.