Long time guest blogger Scott Newport joins us today with straight talk about what he learned to do when parenting a child with special needs stinks. Here’s the tale of his latest stinky adventure at C. S. Mott’s Children Hospital at the University of Michigan.

When Parenting a Child with Special Needs Stinks

“Scott and Penni, I know this is hard. It stinks even having to say this, but Evan may not make it to his first birthday. You guys may want to think about getting a burial site for him.”

The doctor who told us that many years ago was in his second year as a fellow, training to be a children’s hospital intensivist. He was partially correct. We did eventually bury Evan, but it wasn’t till he had lived seven pretty happy years.

Even though Evan is gone he left me a gift, sort of a legacy. I now help mentor new parents of terminally ill children. I also engage staff and faculty on strategies in working with these families. Last week I was reminded of the doctor’s comment and when parenting a child with special needs stinks.

One afternoon I was given a referral to a family about to leave the hospital when I heard someone say, “Scott, I just finished a twenty four-hour shift. I really smell!”

“That’s okay,” I said coaxing the voice closer. “I still want a hug.”

“Okay then,” she shrugged. “It’ll have to be a proper one.”

Carolyn wove around other staff members filling the sterile hallway. As placed her charts on the Formica counter, my eyes took in the “Wall of Courage” displaying the glowing faces of children from days past. Evan’s photo is right in the middle.

Carolyn is a spunky, young doctor at C. S. Mott Children’s Hospital at the University of Michigan. She is starting her second year of a fellowship in the Intensive Care Unit. The fellowship is for the best of the best doctors in the country, physicians who have already completed pediatric residency training and are pursuing a sub-specialty in critical care. We met for the first time last year in July at a boot camp for new hires facilitated by Dr. Tim Cornell. I represented the patient and family side of medicine in a high stress, pediatric intensive care environment at the boot camp.

After our embrace we stood there for a moment and smiled at each other.

“Was there one thing from last year’s boot camp training you put into practice that impacted the way you do medicine?” I asked her.

Carolyn didn’t hesitate. “Yes there is. When you talked to the doctors, it gave me a sense that I may not have to be afraid to talk to parents with critically ill kids.”

Before she could say another word a nurse, who had obviously been listening to our conversation at the check-in desk, came closer and leaned in to hear the latest gossip on the floor.

Carolyn continued, “When I go into talk to parents about bad news now, I’m more confident. I’m also aware that many of the families already know what I am going to say.”

After saying good-bye I walked passed the same conference room where the boot camp was held a year ago. I couldn’t help but remember her face at the table that day.

I know from experience many of the new doctors have two fears. One is how to give bad news and the other is to find a way to offer hope in dire situations. After talking to Carolyn, I know she’s got the first one down. I bet if I ask her the next time we meet, she’ll have an encouraging answer about the hope part, too.

That evening I thought about the trainings I do with nurses, medical students, and first years fellows like Carolyn. You see, I’m just a carpenter and never had a higher education. My hands are callused. I have irremovable stains under my finger nails. I often wonder if the work I’m doing with these highly intelligent folks stinks to them.

If I did stink last year, Carolyn never noticed. When she gave me that proper hug, I never noticed her smell either. And maybe just maybe that nurse who listened in got a bit of inspiration and training from two stinky people. I’m okay with that, too.

Reminiscing about the second-year fellow from fourteen years ago, I wondered if the way he said our son was going to die was the best approach. It did stink, but it was a special moment in our journey because he really cared. Second year fellow Dr. Carolyn Vitale cares too. She has a hope that will last a lifetime. It will surely be a sweet aroma passed down to those who will one day train under her and inherit her passion—all the sick kids and families at C.S. Mott Children’s Hospital, families just like mine, who know that sometimes parenting a child with special needs stinks.

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