During Kids Transplant Week, transplant dad and UNOS board member, Joseph Hillenburg, provides an update on his son, Ben, who is lovingly referred to as Mr. Recycled Parts. He also offers insight into what life was like for transplant families in 2020.
During the 2019 observation of National Pediatric Transplant Week, I wrote about Ben’s story for the National Foundation for Transplants’ blog, the Second Chance. Ben is a smiling, laughing, somewhat shy, 9 year-old boy who received a heart transplant at two months of age. Something is different now, and it’s fortunately not the health of his transplant.
Most people are familiar with the phrase “May you live in interesting times,” which is intended to be interpreted as both a blessing and a curse. The last year has certainly been interesting as the world finds their “new normal.”
We are issuing these guidelines because we have to, but many of our [pediatric transplant] families already know the drill.
For transplant recipients and caregivers, the “new normal” is actually a bit familiar. We all know what stress everyone went through last spring at the beginning of the COVID-19 pandemic. All of a sudden, everyone had to wear masks, be socially distant, exercise good personal hygiene, etc. To the family of a transplant recipient, these were all second nature. The transplant team at our hospital sent out memos to their parents on best practices, and the pediatric transplant community crafted with guidelines for parents. What I heard over and over again from providers was “We are issuing these guidelines because we have to, but many of our families already know the drill.” Ben had been comfortable with masks when he was a baby, not because he constantly wore them, but because there were times when it was prudent, and his older sisters adapted immediately as well (and readily accepted the reasons for doing so). Staying socially distant was easy – because we had gone through precisely this regimen during Ben’s early days after transplant.
For many transplant recipient families, the hardest part of the pandemic was not the pandemic itself, but the indirect effects. Shortages of staple food supplies (and toilet paper!) made life much more difficult than it needed to be. Resistance to COVID precautions prolonged Stay at Home orders. Some families needed one parent to stay at home more often as schools closed, which potentially meant a loss of income (and this hurt transplant moms more than dads – so please buy your local transplant mom a cup of Joe – and give them a job.)
Not all changes were bad. Unless Ben needs a diagnostic exam, many of his routine hospital appointments can be done using a telehealth system, such as Zoom or similar. For those patients who don’t live close to their transplant center, this means that an hour clinic visit just takes an hour, and not all day. Many workers can now work from home, at least much of the time. It remains to be seen the good that came out of the pandemic will remain, but progress like this represents the silver lining.
One thing that hasn’t changed, however, is the need for organ transplants. During the early days of the COVID-19 crisis, many transplants (especially living donation) practically came to a halt as health care systems were inundated and transportation ground to a halt. Eventually the system recovered and represented a record year. However, living donation and pediatric donation took a particularly big hit according to UNOS statistics, we won’t know for some time how many lives were lost due to these missed opportunities. It appears that 2021 will represent some return to normalcy for transplant numbers, and that means more people will need help getting transplanted. They’ll need social and emotional support. They’ll need structural help from the government. And they’ll need your financial help. Whether it’s through National Foundation for Transplants or another similar organization, you can help.
If you are the parent of a recipient kid, know one, or are a donor parent (whose thoughts are always with us recipient families), please tell your story on social media using the hashtag #KidsTransplantWeek. And remember that the “new normal” isn’t so different for some of us.
Joseph Hillenburg is a transplant dad, aviation geek, and Information Technology (IT) professional at Wi-Tronix, LLC. After his son’s transplant, Hillenburg searched for other ways to help pediatric patients. Initially, he joined UNOS’ Patient Affairs Committee, but his status as a technology professional led him to their IT Advisory Committee. He was later named to their Board of Directors and their Pediatric Committee.
He lends his technology expertise to help advance UNOS’ mission. United Network for Organ Sharing, or UNOS, is the private, non-profit organization that manages the nation’s organ transplant system, OPTN (Organ Procurement Transplant Network). Learn more at unos.org and optn.transplant.hrsa.gov
Joseph encourages everyone to help heal and save a child’s life by becoming an organ donor at RegisterMe.org