Dear Doctor | Know Better, Do Better.
GiGi’s Playhouse is made of inspiration, belief, achievements and the beautiful stories of every person who becomes part of this family. Today we are proud to share the words and heart of GiGi’s Playhouse Tinley Park founder, Diane Husar. Like many her introduction to the Down syndrome world was less than what it should have been, but like so many amazing mothers she did not let it define her or her sons story. Enjoy.
I’m going to share a not so positive part of my Down syndrome journey…receiving the diagnosis. I was 39 when I got pregnant…I was considered “geriatric.” LOL. Isn’t that the best!?!?! Anyway…doctors REALLY REALLY wanted me to do genetic testing, but I was only going to be pregnant one time in my life and I just wanted to enjoy it. So I said no. Repeatedly…to the point that I asked them to put a post-it note on my file that stated…”Do NOT ask her about genetic testing again.” So they stopped.
I knew because of my age that the chances were higher that there would be some kind of complication, so what I did agree to was a Level 2 ultrasound that showed no indicators of Down syndrome. My hubby and I both breathed an enormous sigh of relief that day. We also found out we were having a boy. It was a REALLY good day. I wasted no time worrying for the rest of my pregnancy. Luke was full term, I gave birth with no issues, and I had 12 whole hours to enjoy just being a Mom before I was given his diagnosis. 12 hours. My parents went home, by hubby went home. I tried to sleep but you know how hard that is in the hospital.
The next morning, my lovely friend Laura Vieyra Lesauski came in to visit me. A nurse came in soon after and she stood by my bed. Then a doctor came in and stood by the other side of my bed and informed me that he had checked on Luke and that he believed he had Down syndrome. My heart is racing even now as I type this. These words were NOT on my radar…I had not given that kind of diagnosis one ounce of energy since the ultrasound. As the words sunk in, my poor friend was in the room hearing them with me. And the worst part…my husband was parking his truck, and even though the nurse later told me she begged the doctor to wait just a few minutes for him to arrive, he told her he “had to get back to the office.” So, I was left to try to wrap my brain around Down syndrome, while worrying about my poor friend, and then worrying about how I had to tell my husband myself.
It will not go down in history as one of my favorite days, I can tell you that. A few years later, when I was no longer angry at that doctor…I sent him a letter, and this is what I wrote:
January 3, 2011
Dear Dr. _________,
It has been years since our last meeting, but I promised myself I would send you this letter one day. I wanted to write it and send it with no anger involved. That is how I hope you receive this message I am sending today.
In August of 2007, I gave birth to my son, Luke Husar. I did not do genetic testing and therefore, did not know ahead of time that he had Down syndrome. You were the pediatrician on duty that morning at Christ Hospital, and so it fell on you to be the informant of this news.
As a doctor, I’m sure that it is not easy on you to have to tell unsuspecting parents that there is a problem with their newborn. Believe me, I have placed myself in your shoes many many times. Not a pleasant or easy task.
The problem is that you chose to inform me of this news while my husband was parking his truck in the parking garage. The nurses begged you to wait five minutes until you informed me so that my husband would be with me. You told them you had to get back to the office. So, instead of being with Luke’s father at the time you delivered the news, I was sitting with a family friend. I then had to inform my husband on my own.
That moment in time is forever etched in my memory…I can see you standing next to my hospital bed, I can hear you delivering the news, I can remember our friend’s reaction, and I can remember the nurse rubbing my leg attempting to console me. That was a monumental moment that forever changed the course of our lives. For you, it appeared to be just another day at work.
I am asking that in the future, you never place a new parent in this position. Please remember to show compassion. Allow for the parents, if at all possible, to be delivered this news at the same time. Maybe you knew at the time that a diagnosis of Down syndrome really isn’t such a horrible thing. But as new parents, we didn’t. I should have had my husband at my side for support. I did not.
Thank you, Diane, for sharing, we are so thankful for all you have done to make your community and the world a better and more accepting place!
In 30 days we need ONE MILLION people to promise that they will be accepting, generous and kind!
It’s not OK to allow another person to be bullied, degraded or made to feel inferior. Corporations, schools, and the like can all get involved and show that we are all better than what the world is looking like today. Promise your global message of acceptance today! Next, challenge your friends on social media to do the same! Draw a heart in on your hand, snap a selfie & tag #gigisplayhouse
Yep… I have a similar hurtful memory of learning my child had a disability. Mine went like this:
I was supposed to have tubal ligation the morning after my daughter was born. When a male nurse came in I asked why we had not been preparing. He said “well, since something is wrong with your baby, the doctor doesn’t want to do it”. And that’s how I found out. All of it.
I was 20. Single. Alone.
I’m 59. My daughter is 39 and has Prader-Willi Syndrome
I forgot about this till I read your post. I think I’m still mad.