In February 2016 our identical twin daughters were unexpectedly diagnosed with restrictive cardiomyopathy - the rarest form of cardiomyopathy. At 14 months old their symptoms were so advanced that we were told that the best chance at "long term" survival is heart transplant. This is their story.
Chloe and Kendall Roehling 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. These two symptoms were deemed to be the result of being cramped in the womb. After a brief stay in the NICU, Chloe for 11 days and Kendall for 8 respectively, the girls were discharged and ready for life at home with their older brother. Weekly occupational and physical therapies started immediately post birth to assist with their high muscle tone.
Fast forward to February 27, 2016. After waking up from their afternoon nap, we noticed that Chloe was not using the right side of her body. She wasn't grabbing with her hand, standing on her leg, and didn't notice the graham cracker that was stuck between her lips on the right side. Hindsight is always 20/20 and looking back we should have taken her to the emergency room in that moment however as any parent can appreciate, we decided to wait. After a semi-sleepless night on our part the kids woke up at 6 am the next morning like clockwork. Walking into the girls' room, Chloe was awake but not standing in her crib which is highly unusual for her. A quick assessment reveled that she still wasn't utilizing the right side of her body and now her face was a bit droopy. We immediately took her to the emergency room at Children's Hospital of Wisconsin. A CT scan was completed and revealed that Chloe suffered from a left middle cerebral artery (MCA) stroke. She was immediately admitted to the hospital.
Through the diagnostic process, the CT and subsequent MRI, a brain aneurysm was ruled out. Since there are essentially two ways people suffer strokes - aneurysm or blood clot - the search for the clot started. The medical team was able to find a blood 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 next on the list.
The doctors were unable to find any unusual holes in Chloe's heart however they did find something else. They noticed that the squeeze function of her heart was relatively normal however the filling or relaxation function of her heart was not. Chloe's heart disease was so advanced that the only option that would provide her a chance at a normal life was heart transplant. Chloe 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 daily rounds checking 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 we received the call that we were waiting for - a donor heart had be 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. She is thriving at home in her own environment, enjoying the freedom to move around without IV's, and being able to play with her brother again.
Coincidently, we received the call that a donor heart was found for Kendall on May 30, 2016 - a mere 20 days or so after Kendall was listed at 1a status. Kendall went in for surgery at 10:15 pm May 30, 2016 and received her second chance at life on July 1, 2016. After spending just over two weeks in the hospital, Kendall will be discharged on July 16, 2016.
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 goal is to share our story in order to help increase awareness and the need for organ donation - especially for children. Additionally we would like to give back to the Herma Heart Center and the pediatric Heart Failure and Heart Transplant program at Children's Hospital of Wisconsin.
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.
Many people have asked us "how can I help?" There are many ways to make an impact - sign up to be an organ donor yourself, encourage others, talk with people you know about the importance of pediatric organ donation. Your local blood bank is always in need of donations. There are other ways as well which we've outlined on the Take Action section of our site.
Your willingness to read our story is sincerely appreciated. Thank you for helping us pay-it-forward.