Heart Strings By Jerry Harpt

I have a 3-year-old grandson named Aaron. He is tiny for his age, has blond hair and blue eyes. He doesn’t know it but he is a charmer. He teases with you, smiles at you, says his meal prayers with one eye open, and whispers, "I love you," in your ear. All this, and considering that Aaron has Klippel-feil Syndrome, would make the best-intentioned person take inventory of his or her attitude toward life, recognizing that most pains are mere bumps along the road.

Klippel-feil Syndrome is a physical malady that shows up in many forms. It is congenital. In Aaron’s case, it started at birth when his color indicated that his body was not properly oxygenating his blood. Diagnosed with Transposition of the Great Vessels, he was flown by helicopter to Children’s Mercy Hospital in Kansas City before his parents had the opportunity to welcome him into the world. At a time when Aaron’s heart was about the size of an adult’s thumb, a cardiac surgeon switched around its two major vessels.

I saw Aaron for the first time in the intensive care unit. Tubes and wires ran to and from his body. His heart was racing. So was mine. I would not see him again until he was three months old but I was grateful for the progress he had made. He was charming already and fun to hold, looking into your eyes and cooing on cue.

At that time, Aaron had a stiff neck. Doctors attributed this to birth trauma and recommended that his father, my son Dan, stretch it by twisting his head in an exaggerated manner, several times a day. I watched this exercise and listened to Aaron whine during the twisting. I had trouble with my own composure and would ask to hold Aaron just after the exercise. I held him as much for my own comfort as for Aaron’s. Aaron would look up at me and start to coo, as if to say, "Don’t worry."

It was some time later that tests discovered fusion of two vertebrae in Aaron’s neck. This dilemma, part of his syndrome, was determined permanent. The twisting exercises had been unnecessary. Dan felt hurt over the undue strain he had been placing on Aaron’s neck. He and his wife, Liz, were alsosad to learn that Aaron should avoid rough contact. Maybe Aaron could golf and play tennis. Maybe he could drive a car.

Aaron, of course, was too young to know of any future dilemmas. While his parents worried about teasing and proper growth, Aaron was the happiest of boys. He teased and he laughed. He demonstrated how high he could jump, even though his feet never left the floor. He crawled up on your lap, expecting you to read him a book.

Shortly before Aaron’s third birthday, he and his brothers, Jared and Brett, got the flu. Jared and Brett recovered in two days but Aaron’s flu continued. His parents were concerned with his listlessness and, after a week, took him to his pediatrician for testing. Nothing was found.

Another week went by and Aaron was still sick, listless, and didn’t care to get out of bed. His parents took him to another doctor and this time they found what they hoped they wouldn’t. Aaron had a large brain tumor.

Within a day, Aaron’s tumor was removed through two incisions that required many stitches. Preliminary indications showed the tumor to be benign, a positive sign. The following day tests showed the tumor to be infected. To offset this problem, a tube was inserted into Aaron’s body for the administration of antibiotics. The medicine would pass through this tube, four times daily for a month. One of these administrations would take place at 4 a.m., at first in the hospital and later at home.

During this time Aaron had lost much of his childlike charm. He was petrified of nurses who walked into his hospital room, thinking they would hurt him again with needles. He didn’t understand why he had to have a tube stuck in his body. He didn’t understand why he was awakened at 4 a.m. each day, to get medicine.

Aaron’s trauma was compounded when he was given anti-clot shots twice daily to offset the effects of his medicine. He panicked when he saw the needle. He hugged his mother and father and cried while the shots were administered. He tried, through the eyes of a 3-year old, to understand that the shots would make him feel better.

Once Aaron was sent home his parents had to administer his daily shots. When he awoke each morning he begged, "No shots today." During the day he asked, "Do I have to have another shot?" He became angry and slapped at his dad when he was getting the shot. He would say, "I don’t want you for a daddy anymore." Finally, as his month of shots was nearing its end, he started to say, "This shot is good for me, Mommy and Daddy." Little by little, his charm was returning.

In the meantime, a MRI determined that parts of the tumor were still present in Aaron’s brain, near his sinuses. He would need another operation and it would happen within four weeks of the first. Crushed, Dan and Liz continued their daily regiment of giving shots and administering antibiotics. Inner courage and a strong spiritual base pushed them on. What else could they do?

Aaron’s second operation proved successful even though a section of skull bone was permanently removed and will not fill in. Small parts of the tumor, or possibly scar tissue, were also left behind to keep from permanently damaging the sinuses.

Within days of the operation, spinal fluid started to leak through the stitches and the swelling that protruded from Aaron’s neck and the base of his skull. Aaron’s neurosurgeon, expressing concern about spinal meningitis, scheduled an operation to implant a shunt for draining excess spinal fluid. The doctor told Aaron’s parents that the shunt itself could even be a cause of infection. Dan and Liz, concerned about a third major operation in such a short period, played the odds and asked for more time to see if the swelling could go down on its own.

In the meantime Dan applied an ace bandage to Aaron’ head to compress the swelling, hoping that this would control and alleviate the excess spinal fluid. Aaron, already stung by so much medical attention, was not receptive to this new treatment. To ease his pain, Dan applied an ace bandage around his neck as well. When Aaron’s brothers, Jared and Brett, saw this, they also clamored for an ace wrap. Soon a family of five, three little boys and two parents, were walking around the house wearing ace bandage turbans. Within days, they all took the bandages off. Aaron’s swelling had gone down and his drainage stopped.

They endured the pain and have no time for anger. When the family takes turns sharing meal prayer, they always ask God to take special care of those with greater needs. It is love scenes like this that urge me, Aaron’s grandpa, to pick up this little bundle of joy, examine the stitch line on the back of his head and neck, and say, "Honey, do you realize how lucky you are to have parents like yours?" And then he cups my ear in his little hands, moves his lips up close, and whispers, "I love you."