• Article
  • March 15, 2018

A Parent's Perspective on Patient Safety

Andrew Busenbark recovers from double open-heart surgery at Maria Fareri Children's Hospital.
Andrew Busenbark recovered from double open-heart surgery at Maria Fareri Children's Hospital.

By Megan McDonnell Busenbark 

One of this mom's most valued partnerships is the one she has with the children's hospital that saved her son.

Without a doubt, Dec. 19, 2005 was the best day of my life. It was the day my husband, Brian, and I welcomed our first child, Andrew. We were supposed to come home as a new family of three on Dec. 21—my birthday. It was like a fairytale. At least it would have been.

Instead, on Dec. 20, less than 24 hours after Andrew's birth, Brian and I went from the highest of highs to the lowest of lows. Our baby was diagnosed with two congenital heart defects: transposition of the great arteries and coarctation of the aorta.

We stood helplessly by, as our newborn was swept away in a helicopter, headed for Maria Fareri Children's Hospital in Valhalla, New York.

Here, Andrew would undergo a life-saving procedure that night. Here, he would have two open-heart surgeries at just 3 days old. Here, the medical team would care for Andrew, keep him safe and save his life. And so my partnership with this special place began.

Partnership for Safety Task Force

I have been a member of the Family Advisory Council at Maria Fareri Children's Hospital since the group was founded five years ago. Out of that, came the opportunity to also serve on the hospital's Partnership for Safety Task Force. The task force was formed to help resolve conflicts between staff and families—conflicts that could lead to patient safety issues.

For more than two years now, I've had the privilege of serving on this multi-disciplinary task force, working alongside other parents, doctors, nurses, administrators, and child life, social work, patient relations and quality team members to achieve our common goal: to create an environment where staff and families feel comfortable and confident to speak up to reduce "never" events. The initiative is called Speak up for Safety.

The results

Andrew Busenbark today, at age 11.
Andrew Busenbark today, at age 12.

As a parent, it was extremely rewarding to help build this campaignfrom messaging to help staff and families easily identify safety risks to tools (including a video, safety cards and posters) that empower both staff and families to speak up when they see potential risk.

The team at Maria Fareri Children’s Hospital regularly tracks and analyzes a series of safety indicatorsfrom patient ID band checks and hand hygiene to "good catch" events by family members and more. For example, the number of falls in the presence of the family dropped 20 percent from 2016 to 2017. In addition to the stats the team tracks, mounting anecdotal evidence is pointing to positive change.  

Staff members are reporting fewer conflicts with families. Parents have been flagging staff more often when they notice a change in their child's condition. There has been an increase in the number of "good catches" by parents who speak up around their child's medication, and when they do, nurses don't say, "That's what the doctor ordered." They listen to the parent. They check on the med and the dosage to make sure everything is right. Bottom line: they partner with the parent to ensure the right outcome.

The rewards

I know it takes a significant culture shift—and mindset shift for staff and families—to pull off an initiative like this in a health care setting. I credit the incredible team at Maria Fareri Children's Hospital for making it all happen. As a parent whose son was—and continues to be—treated there, all I can say is how rewarding it has been to be one small part of such important change.

While my husband and I would do anything to take away our son's heart issues, we believe we were given this responsibility for a reason. Well, for many reasons. One of them is to give back to those who helped himand us. And this opportunity to effect positive change for the health care teams, families and patients at Maria Fareri Children's Hospital has been, in a word, humbling.

Today, Andrew is 12. He's in sixth grade. And he's thriving. (He plays travel basketball with the best of them.) He's our only child, so when the team at Maria Fareri Children's Hospital saved his life, they saved ours too. We have a family because of them. I can't think of a better reason to partner with the children's hospital that saved us all. And to do everything I possibly can to help the teams that I know will change the lives of other children and families—just like they changed ours.

Send questions or comments to magazine@childrenshospitals.org. Megan McDonnell Busenbark is a writer for Children's Hospitals Today and founder and principal of Encore Communications LLC, in New Fairfield, Connecticut. Above all else, Megan is the proud mother of Andrew Busenbark.

Megan and several members of the Partnership for Safety Task Force at Maria Fareri Children's Hospital will present at the 8th International Conference on Patient- and Family-Centered Care: Promoting Health Equity and Reducing Disparities in Baltimore in June 2018. 

This team also spoke at the 7th International Conference on Patient- and Family-Centered Care. Their presentation is available for download