Friday, November 30, 2012

A small victory?

I gave the hardest presentation of my life today. I spoke on sleep related deaths and SIDS to a group of about 150 nurses and state employees. In my talk I reviewed different aspects- views of SUIDS parents (sudden unexpected infant deaths), the long term effects on families, anatomy of Perry's loss that broke it down into factors, and spoke about risk reduction of sleep related deaths. The irony is that I think most aspects were already covered by many experts.

I started my talk by explaining that in fire prevention, sometimes we presented lost lives by pairs of shoes. I explained that today I wasn't talking about a statistic, but my son, and I pulled out his small pair of shoes and put them on the podium. I set out rules- that it was ok if I cried, they weren't doing anything wrong nor was I by crying. It was ok to ask questions, I'd  let them know if I was uncomfortable. I went on to say that my son has a name, his name is Perry, please refer to him as Perry.

Was it a success? Have any of my efforts been?

As I spoke, there were maybe two wigglers in the back- you know the texters who will disregard any presentation. But I noticed that 148 pairs of eyes were on me. The state medical examiner had tears in her eyes, and there were many that were visibly moved. I was blunt in portions, but I think they understood.

Afterwards, many people came up to me.

Many thanked me and called my presentation brave. I had nurses from the hospital I delivered Emily at come and explain that many things were in the works already- pulse ox screenings for newborns in January (you can thank other baby loss Moms like Cora's who have fought for this in other states) and sleep sacks at Baptist. Vanderbilt, where Perry was born, is still using blankets, but perhaps that too will someday change.

The DHS person in charge of daycares explained that they received my letter and cried when they read it. Starting in January they will require taking blankets out of daycare centers and using sleep sacks or footed PJ's instead to be more in line with the Academy of Pediatrics recommendations. After January, this means I will no longer have to walk into Emily's (and what should have been Perry's) daycare and see infants under thick loose blankets. I will not have to have this reminder if I am blesssed with another healthy child. When I help with any daycare fire inspections in TN, these children will be in a safer environment and I won't worry about these babies as much. Perhaps a parent will stop and think twice about a blanket if they note that the daycare doesn't use it- especially if the hospital they delivered at doesn't.

I feel like in a small way, we are/have encouraged a cultural change in TN.

Sometimes best practices have a habit of spreading. Perhaps one day this will be standard fare in every state.

In the audience was a pediatrician who helps revise safe sleep recommendations for the American Academy of Pediatrics. Have I deposited anything in his mind, I wonder? He thanked me, and finished by saying my presentation was very practical. In some ways our presentations were mirror images that were imperfect copies; his shaped by statistics and tables- mine by experience.

Does it make Perry's death hurt less? No, but it does take away some of that bitterness of losing your child and yet the world revolves as if they didn't exist. At times it seems our tragedy is nothing to others, pretend and it didn't happen. Pretend and it won't happen again. Because when I see babies in daycares I will know the blankets are gone because he mattered to me and somebody else thought his loss was important enough too. And they acted.

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