Caleb’s story was written by his parents, Myron and Ruth Troyer.
“Your test is positive” were the welcome words we heard when we tested for pregnancy. We were still grieving the loss of our stillborn child several months prior, so with this good news came anxiety and the question, “Is everything okay?”
Months went by with doctor visits and ultrasounds. A stress test graph showed that our baby’s heart was not responding to stress as it should. After an overnight hospital stay to monitor the baby’s heartbeat, we were told “everything is fine.”
Six days prior to full term, our doctor noticed a low fluid level and decided to induce labor. The emotions we felt after our baby’s first cry were indescribable to say the least. After all the anxiety and tests, we thought we had a healthy baby. We named him Caleb.
Three days later, a visiting nurse noticed Caleb’s fast breathing and called our family doctor, who thought it was okay to wait a week, until our scheduled appointment, to check it out.
But on the tenth day of Caleb’s life, his chest started retracting and his breathing increased to one hundred times per minute. We took him to the local hospital where an x-ray showed an enlarged heart. He was transferred to Akron Children’s Hospital, where they performed minor surgery to insert IVs, totally paralyzed him, and put him on a breathing machine.
After many tests, we received a diagnosis – hypertrophic cardiomyopathy, for which there is no cure. We were told that Caleb would not live longer than a year. There was nothing that could be done.
We also found out that he had restrictive cardiomyopathy and possibly metabolic cardiomyopathy. The fibers in his heart muscle were not lined up properly causing them to work in different directions, resulting in a weak heartbeat and enlarged heart. It also caused his lungs to not generate enough oxygen, creating fluid buildup behind his lungs – the adult equivalent of congestive heart failure.
It truly was a medical marvel that Caleb was alive at the end of that first day in the hospital. We were thankful for the doctors and nurses who used their God-given abilities to maintain life. On the sixth day of his hospital stay, we were told that Caleb may not make it through the night. That night we committed him and released him to God.
The next morning, Caleb was still alive! It was an Abraham and Isaac experience, reminding us of how Abraham must have felt when God said that he didn’t need to offer up his son after all. Caleb started to improve, and we took him home.
Around this time, we learned about a genetic doctor in Geauga County who had success with treating heart patients nutritionally. Here was hope! Coming from a big city hospital to the humble DDC Clinic convinced us that it was one of the best kept secrets in Ohio. Our initial visit, which lasted several hours, was encouraging. Dr. Wang listened not only to our medical needs, but also to our emotional and spiritual concerns.
We treasured every day we had with Caleb, making him as comfortable as possible, and giving feedings and medications every three hours. After a month at home, Caleb quietly passed away in the wee hours in his mother’s arms. He was seven weeks and three days old.
While Caleb did not respond as well to treatment as some other children, we feel blessed by our experience with DDC Clinic. We knew Caleb had a purpose, no matter how short his life was. God knows who our parents need to be to form us to fulfill the purpose He has for each one of us.
A New Life
Time passed, and we were expecting another child. We were concerned that this child could also be affected by hypertrophic cardiomyopathy. We had two options for testing: Taking amniotic fluid before birth or collecting cord blood at birth.
We opted for using cord blood. No matter what the outcome, testing was a win-win. If the test was negative, we would know right away that our child was healthy. If it was positive, we could keep our child comfortable at home, eliminating the need for a hospital stay.
Our daughter was born by C-section and within minutes started turning blue and having trouble getting oxygen. We just “knew” that we were going down the same road as before.
I planned to ship our baby’s blood sample “Next Day Delivery” to DDC Clinic since we were two hours away. When the nurse asked about our preferences on transferring our baby to Akron Children’s Hospital, I had to have her blood tested NOW! A taxi driver was summoned, and DDC Clinic had the sample that day.
Testing at DDC Clinic was in emergency mode. Upon receiving the blood, they immediately started the testing procedure, purifying the DNA, amplifying it and using the sequencer. With the supreme effort that the DDC Clinic team put in place, they were able to get the results in an amazingly short period of time. “She’ll be fine!” were the best words we ever heard Dr. Wang say.
The value of genetic research and testing cannot be overstated. Now anyone can have a blood sample drawn to see if they carry this disease. In our case, we were able to go home from the hospital knowing that if our child got sick, it wasn’t because of hypertrophic cardiomyopathy.
While it is hard to talk about the financial end of things, as it seems irrelevant when it involves “quality of life” for special children, the fact remains that the sooner you diagnose and treat your child, the more savings you have for the long term health care costs of our community.
We thank everyone at DDC Clinic for the passion they have in fulfilling their mission. May God bless!« To patient stories