Friends of EKF - Mark and Melissa Kisner, Parma, Ohio
Mark and the Berlin Heart
In late Summer, 2002, Melissa Kisner, from the Cleveland suburb of Parma, Ohio, was entering the final weeks of her third pregnancy. Her first and second trimester had passed uneventfully, but late in her third trimester, her obstetrician was growing concerned about the apparent small size of the baby she was carrying. A detailed ultrasound at 38 weeks revealed a cause for concern. Melissa’s baby, a boy to be named Mark, was in heart failure due to a critically stenosed aortic valve. Melissa was frightened about the finding but was comforted to know that a team of cardiologists at Rainbow and Babies Children’s Hospital in Cleveland, Ohio was up for the challenge.
Mark Kisner was born on September 11, 2002, and as expected, had a critical lesion on one of his heart valves. Doctors performed a balloon procedure in the cath lab when Mark was 5 days old as a temporary fix to open the valve further and allow Mark’s heart to function better. The initial procedure was a success and Mark was allowed to go home within a couple of weeks. At five months old, Mark required a major open heart surgery to restructure his valvular anatomy. The surgery was again performed at Rainbow and Babies Children’s Hospital, and Mark did very well. There were no complications. Doctors told Melissa that Mark would need another major open heart surgery when he reached 4 years old to optimize the effect of the first surgery, and make some structural changes that would allow his heart to grow with him into adulthood. That surgery was performed in the fall of 2006. It was complex, but successful, or so his doctors thought.
In the Spring of 2008, when Mark was 5 years old, he began showing signs of fatigue and frequent bouts of bronchitis and pneumonia. A more thorough work up revealed Mark was actually in heart failure once again. Doctors adjusted some of his medications and asked Melissa to bring him back for a heart catheterization a month later. The cath study revealed that Mark was in severe heart failure and had developed some moderate pulmonary hypertension (high pressures in the blood vessels leading from the heart into the lungs) as a result. His doctors recommended a heart transplant, and Mark was listed as a status 2A transplant candidate in September 2008. Because doctors felt Mark’s heart failure was stable, Mark was allowed to wait at home for a new heart to become available.
While waiting at home for the call, this adorable redhead and freckle-faced little guy enjoyed the usual musings of a typical 6 year old boy. He enjoyed playing with his brothers, Martin, 12, Matthew, 10, and baby brother Ashton. He also enjoyed collecting Webkins, and being very creative with paint and crayons.
Several months passed and still, no call that a donor heart had been located for Mark. In April 2009, the transplant team wanted to have another look at Mark’s heart function. A routine heart cath revealed progression of both his heart failure and his pulmonary hypertension. In fact, the blood pressure in Mark’s pulmonary vessels had become so high, that he was no longer a candidate for a heart transplant. He was taken off the transplant list and a trial of intravenous prostacyclin medications was initiated in an effort to reduce Mark’s pulmonary hypertension and help him qualify once again for the heart transplant he so desperately needed. By the end of May 2009, the medications did not appear to be working, and cardiologists in Cleveland recommended that Mark be evaluated for a heart-lung transplant at the University of Pittsburgh Children’s Hospital.
For various reasons, Mark’s work-up in Pittsburgh didn’t commence until late July 2009. It was thought at the time that because of his pulmonary hypertension, a heart-lung transplant was his only real option. He was running out of time. To Melissa’s horror, pre-transplant testing revealed that Mark’s immune system was too revved up. His antibody levels were naturally elevated and were likely to attack a new set of donor lungs with great intensity to the point where a lung transplant was deemed out of the question.
Mark was running out of options. The transplant doctors in Pittsburgh gave Melissa, now a divorced mother of 4 boys, only a couple of options. They suggested she consider taking Mark home without further interventions or study, where it was suspected that his disease would claim him within 3 months. Or, she could choose an experimental route- using an assist device to potentially help rest Mark’s heart and lungs in hopes that he would eventually qualify for a heart transplant once again. Melissa took a week to think about it. “It was a very difficult decision. I thought seriously about the first option. He had been through so much by that time, and there was no certainty that it would work. If it did, that meant life for Mark. If it didn’t, it meant Mark would live on the machine the rest of his days until it malfunctioned. It was a terrible decision to have to make” states Melissa.
But make it she did. She decided to give Mark a chance at life. On August 5th, 2009, Mark was taken into the operating room at UPMC Children’s Hospital and had a controversial assist device known as the Berlin Heart implanted into his chest. The device was developed in Europe in the early 2000’s and has seen widespread use in European heart centers since that time. However, the device has yet to receive FDA approval for use in the U.S. Mark’s transplant doctors had to petition the FDA to gain approval to implant the device in Mark in hopes of helping him qualify for heart transplant.
The Berlin Heart was cumbersome and bulky, and the apparatus dwarfed little Mark as he lay post-operatively in his PICU bed. While on the device, Mark was uncomfortable and irritable. He bled a lot from around the tubes. He received many, many blood transfusions and even arrested once due to the formation of a large blood clot around his heart. “I was beginning to think that maybe I had made the wrong decision to go this route. He was depressed and he lost that little glimmer in his eyes, almost as if he was giving up,” said Melissa. After two weeks on the Berlin Heart, Mark’s doctors listed him again for heart transplant; this time as a status 1A- the highest priority. A week later, Mark’s heart was studied in the cath lab, and it was noted that the Berlin Heart had worked beautifully to reduce his pulmonary pressures by 50% or better. He was now a good candidate for a heart transplant. Melissa was shocked and overjoyed. “Everyone was so happy. This was our first bit of good news in many months. I called everyone I knew, and I couldn’t stop crying.”
Approximately one week later, at 12:15 am on September 5th, 2009, just 6 days before Mark’s 7th birthday, Melissa received the phone call for which she had waited nearly a year. A donor heart had been located for Mark. Mark went into the OR at around 10 am that morning to receive his new heart. It started right up and began beating beautifully. He returned to the OR on the first post-operative day to control some bleeding, but beyond that has done remarkably well. He was discharged from the PICU over the weekend and is now in the step-down unit awaiting discharge from the hospital. It appears that Mark and Melissa are well on their way to a happy ending.
The past several months, from April to September 2009, have been a blur of unanticipated events and crises, one right after the other. Melissa struggled to keep it all together and take care of her family while Mark was hospitalized getting the care and treatment he required. Her older boys, Martin and Matthew, were able to stay back in Ohio with grandparents throughout much of the ordeal.
In April, when things started heating up for Mark, Scott, Melissa’s boyfriend of 3 years lost his job back in Cleveland. It seemed he was taking too much time off of work to watch little Ashton, the couple’s one year old little boy. Melissa needed to be available to take Mark to his doctor appointments and remain with him in the hospital. Because young siblings of sick children are not allowed in the PICU, the task of caring for little Ashton throughout the day fell to Scott. His employer was less than understanding and soon, Scott was out of work. By the time Mark’s hospitalization in Pittsburgh began, the couple had experienced a significant drop in income due to missed work, and had incurred a large increase in additional expenses owing to Mark’s condition. Scott took a temp job in Pittsburgh to keep some money coming in and allow him to be near Mark, Melissa, and Ashton. But funds were still very tight.
In early August, a social worker from UPMC Children’s Hospital contacted the Erika Kate Foundation in search of assistance for the family. The social worker had identified a daycare program in Pittsburgh near the children’s hospital, that could look after Ashton during the day and allow Melissa to be with Mark in the PICU. There were no programs in place to help subsidize the expense of daycare, and Melissa was in no shape financially to come up with the funds herself. The daycare program had been experiencing some financial hardships itself owing to a setback in the local economy. For several weeks, EKF happily intervened on behalf of the family and facilitated this arrangement. Ashton received great care during the day when Melissa needed to be with Mark, and Scott was able to generate some income to keep the bills paid at home. EKF also helped by making a car payment when Melissa was falling behind financially during the midst of their storm.
We wish Mark and his family all the best as Mark continues his recovery and begins to transition back home to Ohio. Please keep Mark in your prayers.
Mark and Melissa
RM
