Not a Death Sentence and a Letter

Last night I was thinking about today's blog post (lets just pretend I write on here daily okay?). I got to thinking that since this is Trisomy Awareness Month then I needed to bring awareness to doctors, specifically a doctor that scared the crap out of me when I was pregnant with Kaleb. I figured that doctors may Google their names from time to time and maybe this post would come up, and he would be better educated because of my blog post. It sounds good in theory anyway.

I've talked about this doctor before whom I met around my 21st week of pregnancy with baby K. His name is Dr. Locksmith. He is a perinatologist at Winnie Palmer and I was sent to him to have an ultrasound and for further testing to see what was going on with my baby. He's a very quiet man and doesn't have the best bedside manner, especially for a terrified woman laying on his table.

The first time I met him I had an ultrasound and he came in and told me and my husband and due to my baby's clenched fist it appeared that my baby had something called Trisomy 18. He told me that Trisomy 18 is always fatal. He recommended getting an amniocentesis to make sure and left the room to get the long ass needle. Once he left the nurse in the room with us told me that she disagreed with him and did not believe my baby had Trisomy 18 because my son's hands were not clenched a certain way and didn't have a couple other characteristics of Trisomy 18. She gave me hope.

It turned out that my baby did not have Trisomy 18, but Trisomy 9. And since then I have found out that Dr. Locksmith was terribly wrong about the life expectancy of Trisomy 18 children. So here is what I would like to say to him...

Dear Dr. Locksmith,
I respect your work as a doctor and as a person but I need to let you know how terribly wrong you are about Trisomy 18. You came into my room and told me that it looked like my baby would definitely die after birth and walked out of the room. First off, you shouldn't tell someone these things if you don't know for sure. Second off, don't just walk out of the room. Has anyone told you that you're child is going to die? Try walking in my shoes. Finally, I hope you never tell another patient that their Trisomy 18 child is going to die. Trisomy 18 is NOT a death sentence and I know many families with T18 kids that live long and happy lives. There are some much older T18 people alive as well, into their 30's, 40's. Please do not comment on something that you have CLEARLY not researched. Even if my baby turned out to have Trisomy 18 I would not have aborted. Please take time to become more knowledgeable in the area of Trisomy, I would hope you would want to do this for future patients and their children.
Sincerely,
Erin

PS: This is Kayden. He has Trisomy 18 and is 10 YEARS OLD. Look at those beautiful eyelashes, he's such a happy boy! He is just one little boy LIVING with Trisomy, there are so many others and I've come to know many of their mothers.
       
PPS: Here are some links to websites you may find to be correct and informative on Trisomy 18.
Trisomy Advocacy Group
Noah's Never Ending Rainbow
Support Organization for Trisomy (SOFT)
Rebekah's Blog, Redefining Incompatible With Life,
Lily's Blog, Journey with Trisomy 18