In February 2016 our identical twin daughters were unexpectedly diagnosed with advanced stage heart failure. Specifically, restrictive cardiomyopathy - the rarest form of cardiomyopathy. At 13 months old their symptoms were so advanced that we were told that the only chance for survival was heart transplant. This is their story.
Chloe and Kendall were born 6 weeks early with a somewhat clean bill of health. No immediate issues were diagnosed with the exception of having high muscle tone (i.e.: tight muscles) and hands that were clinched as fists. After a brief stay in the NICU, the girls were discharged and ready for life at home and weekly therapy started to assist with their development.
After waking up from an afternoon nap in February 2016, Chloe was not using the right side of her body. We took her to the emergency Department at Children's Hospital of Wisconsin. A CT scan revealed that she suffered a stroke that paralyzed the right side of her body. She was immediately admitted to the hospital.
Through the diagnostic process, the CT and subsequent MRI it was determined she had a blood clot that traveled to her brain. The medical team was able to find a clot in Chloe's right hip a piece of which appeared to have broken off, moved through her heart, and over to the left side of her brain. An ultrasound of her heart was the next step.
Through the ultra sound, the doctors discovered Chloe’s heart was enlarged and not functioning properly. Her heart disease was so advanced that the only option that would provide her a chance at life was heart transplant. She was listed on the UNOS transplant list in March 2016.
While waiting for her new heart, Chloe built up quite an entourage at the hospital. She quickly became a frequent stop for many hospital staff during their daily rounds and completed her own rounds to check in on her floor mates in the Cardiac Intensive Care Unit. Walks became a routine part of her day including distribution of her goldfish crackers and practicing her "princess wave".
On May 10, 2016, four months after she was listed, a donor heart was identified for Chloe. She was scheduled for surgery the next day and on Wednesday May 12, 2016 Chloe officially received her second chance at life. After spending 126 days in the hospital, Chloe was discharged on July 2, 2016.
On May 30, 2016, approximately 20 days after she was listed, a donor heart for Kendall was identified. She received her second chance at life on July 1, 2016. After spending just over 5 weeks in the hospital, Kendall was discharged on July 16, 2016.
The journey of a transplant patient doesn’t stop once their new organ is implanted. Rather, that is just the beginning. Constant blood draws to monitor medicine levels, echos to measure heart function, and biopsies to check for rejection are all standard aspects of life now. Tissue rejection is a frequent worry and the question in the back of your mind isn’t “if” the organ will reject but rather “when”.
Our family has received an overwhelming amount of love and support. Through this process we have felt compelled to give back and thus "The Beat Goes On Foundation" was born. Our mission is to improve the quality of life for children diagnosed with heart disease and defects by increasing awareness, raising funds, and investing in impactful research. The hope and vision of our organization is to live in a world where “one transplant for life” is a reality.
Steve Jobs said "You can't connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something - your gut, destiny, life, karma, whatever." Reflecting on 2016 we can't help but think how these dots will connect in the future. One thing we do know is that these dots will connect in a great way for Chloe and Kendall; their story will make ripples beyond anything that we can imagine. We are privileged to be a part of their story and to be their voice.