When My Doctor Said the Most Powerful Thing After My Son's Down Syndrome Diagnosis


With my son Benny turning 2 years old next month (eek), I’m doing a lot of reflecting. I’ve made so many friends, all of whom are on this beautiful journey with me and have little ones with a little extra. Inevitably, when you first get to talking with someone who also has a child with Down syndrome, the question, “How did you find out?” always comes up.  

I’ve heard the most upsetting horror stories that make me sick to my stomach. Can you imagine the first thing your doctor tells you after finding out your child has Down syndrome being, “The life expectancy isn’t great for them”?  

I’ve heard so much lack of compassion on the part of the many medical “professionals” that were there during the delicate time my friends were finding out about that one extra chromosome. Stories of nurses giving attitude about it, doctor’s referring to the child as “it” and parents being pushed toward termination time and time again.  

“You don’t have to be a hero, you know.”

“We will need an amnio ASAP in order to do the abortion this late, but don’t worry, we can still do it.”

“You want to keep it? Why?”

“You do realize the quality of life you are looking at for the child and for yourself, right?”

These are some of the statements that my now dearest friends heard shortly after the diagnosis was given or suspected. These statements are horrifying, poorly-timed to say the least and also all secondhand for me.

This is not the experience I had.

I love my OB. She’s hands down the best gift I could’ve asked for during my pregnancy with Benny. I had no idea about it at the time, but now I know and couldn’t be more grateful for everything this woman did and said to me.

When Dr. Mazey first told me Benjamin did indeed have Down syndrome, the situation was slightly tense. This was the only time during my entire time with her that she was slightly emotionless. She quickly rattled off my options and next-step scenarios. She was looking slightly off to the side and being matter-of-fact about it, even though she was squeezing my hand the entire time. She was professional and to-the-point in the least judgmental way possible. I can tell, especially now with hindsight, she wanted to make sure she didn’t persuade me one way or the other, and I have nothing but respect for her for that. She did her job brilliantly. She used a lot of “if you decide…” statements to make sure I knew nothing was set in stone. She did exactly what her oath would expect her to do.  

I told her termination was not an option for me.

Then she said the most powerful statement I could’ve heard at that moment. She looked me in the eyes and said, “This is your baby in there. He is still your baby. This changes nothing.”  

Through the rest of my pregnancy, Dr. Mazey gave me the most unbelievable support an OB could give. She held my hands when we had to talk about some things that may be difficult, she hugged me the few times I broke down in her office and she made sure to explain every single bit of information to me in a way that informed me without scare me. She called me occasionally to see how I was doing, and she called me out on my bullsh*t smiles I used to try to keep on my face when we talked about the potential health problems Ben might have.  

By the way, once we told her Benjamin would indeed be Benjamin, she never referred to him by anything but his name.  

Unfortunately, Dr. Mazey was out the day I delivered Ben, but her partner, Dr. Gilbert, is just as amazing as her and walked me through the delivery like the champ she is. The next day, Dr. Mazey came to visit us. She walked into my hospital room and snatched that baby up with as much love and excitement as anyone could possibly have. She genuinely smiled at him, and at me, and gushed over how beautiful he was. 

I’m so thankful for the experience I had. Dr. Mazey and the entire staff at St. John Hospital in Detroit were prepared and perfect. They all fell in love with my son and couldn’t have cared less about his diagnosis. They cared for my Benjamin and not for “that Down syndrome baby in room 301.”

Thank you. Thank you. Thank you.

To all of you who weren’t as lucky as I was, I wish I could change the past for you.

But what I can do is attempt to change the future. What I can do is everything in my power to hope those of you out there who have a diagnosis in your future and don’t have the luxury of a Dr. Mazey can find hope and love in the words of myself and my friends as you begin your journey. Please visit “The Down Syndrome Diary” page on my blog to learn more about how we’re trying to help.

Follow this journey on Ben Through It All.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

TOPICS
,
JOIN THE CONVERSATION

Related to Down Syndrome

This Accessible Hotel Is Staffed by People With Disabilities

In the Italian city of Asti is a hotel staffed by people with disabilities. It’s called Albergo Etico. In English, it means “Hotel Ethics.” Hotel Ethics began in 2009 as a restaurant internship for a boy with Down syndrome, according to a Google translation of the hotel’s website. It quickly blossomed into a hotel and restaurant [...]

The Cliche I Heard After My Son's Down Syndrome Diagnosis That's Spot On

I hate cliches. Maybe it’s because my college professors told me to leave them out of news pieces or maybe it’s because I think too much, but I’ve really grown to despise them over the last year. When you get a Down syndrome diagnosis, you hear a lot of cliches from a lot of well-intentioned [...]

10 Things I Love About Having a Kid With Down Syndrome

My son, Parker, has Down syndrome, and I feel blessed and grateful for him. Here are the 10 things I love most about him: 10. I love how awesome toddlers are. They’re funny, cute and have big heads on teeny little human bodies. It makes you go “awww,” and it’s the same lethal combination that [...]

What I Wish I Told the Man Who Called My Son With Down Syndrome ‘Ugly'

I was 23 weeks pregnant when I found out my third child, whom we would name Jay, had Down syndrome and a heart defect he would need to have surgery for within the first six months of his life. During the following weeks, I read blogs and articles, met with other families and immersed myself [...]