FAMILY CENTERED CARE

BY JOANNE RYAN I PHOTO BY BRODY WHEELER

I recently had the privilege of attending my first RMHCR Leadership Conference. We had five days in Dallas Fort Worth Texas. 150 Ronald McDonald house CEOs from North America, South America, Central America, and Canada gathered for the annual Leadership Conference. Part of the week was dedicated to rolling out the framework for the next RMHC Global Strategic Plan as we embark on the next 50 years.

The conference was also a chance to gather in person, and for many, this conference was the first time in over 3 years. The week was filled with wonderful information sharing including best practices in Family Centered Care, uniquely innovative and impactful programs and services and charting the course for how we can more efficiently and effectively identify and then support the needs of the families in our communities. One of our wonderful presentations offered every day by a different CEO was called a “Red Shoe Reflection”. This reflection was an opportunity for a CEO to share their “WHY” and an example of an inspirational story fueling their desire to serve in this capacity.

These powerful stories were a personal affirmation about the important and powerful work that we all do. One incredible story shared by the CEO from the North Carolina, (NC) Chapter was about a young girl who had been coming to his house every 2 months since birth for the past 10 years. She was born with a very progressing form of polycystic kidney disease. Polycystic kidney disease in children is a very rare disease: its incidence is 1: 6000-1: 40,000 live newborns. Polycystic kidney disease in children is inherited through an autosomal recessive pathway. Depending on the age of the children, in which the first symptoms of polycystic kidney disease appear often impacts the severity and progression of the disease. With perinatal and neonatal development of the disease in newborns, 90% of the kidney tissue is replaced by cysts. Children develop rapidly progressive renal failure.

This little girl had quickly progressed into complete renal failure and daily dialysis was the only thing keeping her alive. Her parents had shared that their lives were measured in 24hour periods, and that their comfort came following a successful day of dialysis because they knew they would have one more day with her…. This challenging diagnosis and living from one day to the next was their “normal”.

As a result of their frequent visits, the family and staff became incredibly close. Whether they were in the NC house or not, the staff kept in touch exchanging encouraging notes and celebrating milestone birthdays. The CEO went on to share that over the last few years with each visit it was becoming abundantly clear that this had taken a significant toll on the little girl’s body. Becoming more critically ill, meant she was now able to be placed on a National Transplant Waiting List. During that March visit, it became apparent that she had deconditioned so significantly that if the kidney/Liver match could not be found soon, that will probably be her last visit to the house. To compound the gravity of this situation, this was also March 2020, the onset of COVID. Houses across the world were temporarily closing because of the pandemic. The Global plan for managing through this unknown period of COVID was to temporarily suspend admitting new families into the houses and close the house as soon as all the families in care were discharged.

One by one as families were discharged from the NC house and just as with the other houses throughout the world, the plan was to close as soon as the last family had been discharged to home. Weeks passed and 16 of the 17 families were discharged. The CEO was committed to keeping the house open, just for her and her family so that she could be minutes away if they were able to find a match and possible donor... The call came in at 7 AM on Tuesday March 24th they had found an exact match, and she had to be at the hospital within the hour. This family lived four hours away from Ronald McDonald house and if the house had closed and they had gone home, she would have missed the opportunity for this life saving transplant.

This was one of over 5 stories shared during the five-day conference

It is a remarkable testament to the importance of the SUPPORTIVE SERVICES that are in place to ensure the families are as close to care as POSSIBLE when it is critically needed... We are so much MORE THAN food, lodging and transportation…”

“But the most powerful part was that for the first time in her young life, she and her parents could think about a future beyond the next 24 hrs.” reinforcing how incredibly precious minutes are when your child is critically ill or injured. We realize that it is through our understanding of just how much minute’s matter and that our work results and such profound and significant life-changing outcomes. The CEO shared that the little girl has done remarkable well and now is only admitted for a routine visit twice a year. Her last visit to the NC house was this past January. She greeted him with the same beautiful smile, but there was something different about this visit… she was full of life and for the first time in many years looked healthy happy and proud to show him she had braces... As he shared the story he became very emotional, seeing this 10 year old, and her family who he and his team met when she was only days old, now, healthy, full of life and well enough to be happy about having braces, truly inspired and humbled him… but the most powerful part was that for the first time in her young life, she and her parents could think about a future beyond the next 24 hrs.

It is a remarkable testament to the importance of the supportive services that are in place to ensure the families are as close to care as possible when it is critically needed... We are so much more than food, lodging and transportation…. we are a conduit to care, we are an care access enhancer, we are Ronald McDonald House Charities, and we keep families close … especially when minutes matter most.