Healing a tiny heart

A young family with a disabled daughter wait out the heart surgery of their 3-month-old son.

By LISA PEEPLES and STEVE HASEL

© St. Petersburg Times, published August 7, 2000

[Times photo: Steve Hasel] Kristy Kempton shows her 3-month-old a mirror on his hospital bed while her husband, John, rests behind her. "I believe that I will play basketball and run around with Preston one day," he said.

FLORAL CITY -- South of this small town, dozing under a canopy of large oaks, Istachatta Road winds past the quaint New Hope Methodist Church. A sense of serenity pervades the landscape and envelops travelers.

But just around the bend from the small country church, members of a young family are going through one of the most traumatic times of their lives.

Over the more than four years of their marriage, John Kempton, 25, and his wife, Kristy, 23, have faced so many challenges they almost accept turmoil as a way of life.

Their eldest child, Brooke, 3, is a healthy preschooler, full of fun and laughter. Two years ago, the couple welcomed their second child, Bailey. They were heartbroken to learn that she had only 20 percent of her brain and cerebral palsy, due to a bilateral stroke within the womb.

Then, three months ago, Mrs. Kempton delivered the couple's first son, Preston. Misery visited again as he was born with three congenital heart defects.

But where there is despair, there is also hope. The couple spoke about their inner strength and their trust in God as they prepared tiny Preston, and themselves, for heart surgery.

Bailey measures her progress in increments, and the Kemptons are told she will probably not live a long life. But doctors have said there is a 98 percent chance that Preston will make a full recovery.

"I am so excited for Preston's surgery to get over, for him to be fine and to just get back to the way it was just a year ago, for Preston to be fine and Bailey to be our special little girl," Mrs. Kempton said last week.

Her husband is also looking forward to a full recovery for Preston and the return to normalcy for the family.

"I believe that I will play basketball and run around with Preston one day, that he will be just another normal little kid . . . and that life will go on," Kempton said.

When the Kemptons started dating more than seven years ago, the couple never dreamed that their life would take such turns. Mrs. Kempton was going to be a full-time mother and have six healthy children.

"I always wanted to be a mom. I got pregnant three weeks after I got married . . . and 40 pounds and 10 months later, we had Brooke," she said. "Everything went fine, after 35 hours of labor; she slept through the night when she was a newborn. . . . She was an awesome baby.

"Then, on our second anniversary, I got pregnant with Bailey. We thought having our children two years apart would be a good age for them to play together," she said.

"I gained a little less weight with Bailey, but when I was 32 weeks pregnant, we knew something was wrong. I lost 5 pounds in a short time and my stomach started measuring smaller. Then when I had the sonogram, they knew immediately that something was wrong with Bailey; they thought it was hydrocephalus," she said.

"The labor was very easy, but after she was born, they did a CAT scan and MRI that showed she had had a bilateral stroke. They told us then that she has 20 percent of her brain and that the rest of her head contains fluid. They had no explanation as to why it happened; there is no information to be found on this condition," she said.

Kempton said hearing this news about their newborn daughter was the most difficult time the couple had ever faced.

"I didn't expect anything like that. As a matter of fact, I never thought that I would have ever been able to handle a situation like this with Bailey," he said.

Though the adversity seemed to mount, the Kemptons said it was a time when they changed and grew stronger spiritually.

"We still don't know how long Bailey will live, but she means so much to us. I myself have learned to be patient, look at life a little differently and appreciate the simpler things in life. Sometimes it has been overwhelming and stressful, but God always gets us through," he said.

Just as things were calming down with Bailey, Mrs. Kempton learned she was pregnant again.

"It was totally unexpected," she said. "We had really wanted to wait until Bailey was about 5 before we had more children. But when I was pregnant with him, we started looking at it as a healing time, a time that would help us overcome all that had come our way before."

Doctors, however, found that there was a problem with the baby. They speculated it could be hydrocephalus, diabetes or a heart defect.

Then another shock: Her doctor told Mrs. Kempton that she had tested positive for the HIV,the virus that cause AIDS. Two tests later, doctors concluded that the first test result was wrong.

As that anxiety subsided, the couple got another blow. John Kempton's mother died of breast cancer. She was 43.

"I was absolutely overwhelmed," Mrs. Kempton said.

The news about Preston stunned them. "We truly thought that it just could not happen again, that our baby would have something wrong again. I just kept thinking, "Oh no! Not again.' "

"When you hear something like this, you ask "Why?' but then you ask, "Well, why not us?' " Kempton said. "This was a real character builder for us to see if we could get through this. Then we began to feel that maybe this was something that we could share with other people.

"The biggest difference with Preston . . . is that we were told his problem was fixable, which helped so much. It is serious and all, but at least the problem is fixable. God was so good, because he knows how much we could handle," he said.

Most of the activity that swirls through their country-style home, loaded with toys and therapy aids for Bailey, revolves around a hectic feeding schedule for Bailey, who eats six times a day.

It takes the couple hours to feed Preston, too, because his heart problems mean he, too, must eat six times a day. Sometimes it can take an hour just to feed one meal to each of the two children, which is made possible with in-home nurses and help from Mrs. Kempton's family. Kempton has been given time off his job for the surgery. There also are visits from vision, speech and occupational therapists throughout the week. The children's medical bills have been covered by insurance, relieving the family of additional financial restraints. As Preston's surgery approached, the Kemptons looked forward to their pace of life slowing down.

"We have just been on one roller coaster after another, and we just need things to slow down some," Mrs. Kempton said.

Her husband was very upbeat.

"I am optimistic that everything is going to turn out fine with Preston. And with Bailey, well, she is just my little snuggle bunny," he said.

Dr. James Quintessenza assured the couple that surgery forheart defects such as Preston's has become almost routine. The Kemptons were also buoyed by the prayers and good wishes of hundreds of friends and family members around Citrus County.

The couple arrived at All Children's Hospital in St. Petersburg on Wednesday with the surgery set for 7 the next morning. Preston had his own room, with reclining chairs for the parents should they be able to sleep.

By 5 a.m. Thursday, staff had come to prepare Preston for surgery. When it was time to move to the pre-surgical holding area,Mrs. Kempton asked if she might be allowed to carry Preston herself. The surgery was expected to take as much as four or five hours as doctors repaired two holes and a connective problem.

The waiting began in earnest.About 9 a.m., word came that the surgery had begun. The parents were told to take care of themselves while Preston was in surgery.

The surgical team worked with swift precision, fixing the connective tissue and the smaller hole first. Finally, they patched the larger hole, located between the atria and causing leakage from the left side back to the right side of the chamber. "His little heart has been working overtime every minute of every hour," Quintessenza said.

While the surgeons worked, the heart was motionless and blood flow was handled by a bypass machine. Within an hour after beginning the surgery, the heart was reconnected and began pumping normally while the closing procedure began.

Told the surgery had been completed in less than two hours, the couple was relieved and astonished. "That's unbelievable," Kempton said. "Simply incredible."

Mrs. Kempton said she wouldn't really relax until Preston was off the ventilator and out of intensive care. "Then we're home free," she said.

There was no set timetable for Preston's release from the hospital and the family's return to Citrus County. But there were these words from the surgeon: "He's going to be just fine."

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