Letters from Louise

Posted on April 7, 2010

My youngest son, Jay, was born on a late April night in 1976. After the initial shock of learning he had Down syndrome, our pediatrician informed us that he also had a heart murmur and referred us to a pediatric cardiologist at Children’s Hospital in Oklahoma City.

So at six weeks old, Jay had his first appointment, a difficult visit with him having to drink a thick, milky solution of barium from a baby bottle for chest X-rays, and have an old-fashioned EKG with bands tightened around his tiny arms and miniature suction cups on his little chest. Then we met Dr. Jerry Razook, having no idea this would be a 33 year relationship.

Jay was a sick baby—a fragile child who did not thrive at birth. It was determined that his heart disease would require open-heart surgery. However, a heart catheterization at 14 months old revealed that Jay had developed pulmonary hypertension, making surgery extremely risky. We had a difficult decision to make—put Jay through surgery, knowing there was a great risk he would not survive, or do nothing, realizing he would probably never live
into adolescence.  

As Carl and I sat with Jay during recovery from the heart catheterization, Dr. Razook entered the room. He sympathized with our dilemma and told us he didn’t think any parent should have to make the decision we had before us and for that reason was giving his personal opinion. “I don’t believe he would ever come off the heart-lung machine,” he said, apologizing for such devastating news. He had never known of a child so young to develop pulmonary hypertension.
When he left the room, I cuddled Jay into my arms, rocking him gently as I looked into his sweet, sleeping face, knowing I could never send him into surgery where the odds were greater that he would die than survive. We would take what years we had with Jay, even if they were only a few. But God worked a miracle. No, he didn’t heal Jay’s heart disease, but he kept him alive and thriving, day-by-day and year-by-year.

At 12 years old, with the disease progressing, Dr. Razook encouraged us to seek other opinions for our own peace of mind. Even though he provided Jay with the best of care, he did not want to deprive him of a procedure that we might find favorable elsewhere so we scheduled a full check-up for Jay at Children’s Hospital in Houston and spoke with specialists elsewhere. The results and recommendations were the same as Dr. Razook’s, who would continue to monitor Jay’s health. Through the years we have experienced some scary moments, difficult discussions as well as a litany of tests.  

But there have been encouraging times too, not to mention the delightful surprise when Jay met the one and only, Captain Kangaroo.  Having no idea America’s beloved captain was scheduled to visit the Heart Center, we had barely exited the treatment room when the gray-haired captain ambled into the waiting area, cameramen and photographers trailing behind.  Jay recognized him immediately and practically flew into the open arms of Captain Kangaroo. A photographer snapped a photo of their embrace, and on our next cardiac visit, Dr. Razook surprised us with the treasured memento.

Though Jay is not free of heart disease, he has astounded the medical community for the past 33 years. But now we have to tell Jay’s longtime physician goodbye. Dr. Razook, who resides in Edmond, is retiring. I hugged him as we left the treatment room on Jay’s last visit and thanked him for loving and caring for my son all these years. We have been blessed!

“Thank you, Dr. Razook, for being part of the miracle of Jay’s life. Our family wishes you a long and happy retirement.”

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