Young girl gives thanks for chance to be normal

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November 26, 2008

Anonymous The Joplin Globe Wed Nov 26, 2008, 10:07 PM CST

By Melissa Dunson

mdunson@joplinglobe.com

In many ways, Elise Randall, 7, is like any other girl her age.

Her favorite food is macaroni and cheese. She loves her cat. She thinks the best parts of school are art and music classes. Today, like most of her friends, she will eat too much turkey and spend time with her family.

But the things for which Elise is thankful this year make her different.

She’s thankful that she can finally play soccer after having to sit out of all competitive sports for the past few years. She’s thankful that she no longer has to wear a Holter monitor every day to track her heartbeat. And Elise is especially thankful for the zipper scar that stretches from the bottom of her neck all the way down her chest.

“I couldn’t even pick up my cat, Midnight,” Elise said. “It felt not good. It was scary.”

“She’s tough,” Candice Randall, 34, said of her daughter.

Hole in her heart

It was small, but it was there. Candice strained to see the abnormality the nurse was pointing out in the ultrasound. There was something wrong with her baby.

Doctors told Candice that her daughter either had a hole in her heart or Down syndrome. At 26 years old, the idea of being the single mother of a sick newborn was terrifying.

But, Candice was determined to keep the baby.

“I had the option of let her go with Down and a heart condition, give her away or watch her die,” Candice said.

Specialists in St. Louis later diagnosed the problem as tetralogy of Fallot with absence of pulmonic valve. Elise did not have Down syndrome, but she did have a combination of several congenital heart defects. Elise’s form of the disease was especially rare because one of her heart valves did not develop.

The result was that Elise was not getting enough blood or oxygen to the rest of her body. The oxygen deprivation can be so severe that the child’s extremities turn blue, causing a condition called Blue Baby Syndrome.

Elise Josephine Randall was born two weeks premature at 7:19 a.m. on Jan. 8, 2001, at Barnes-Jewish Hospital in St. Louis. Immediately after her birth, Elise was whisked away to St. Louis Children’s Hospital’s neonatal intensive care unit. Candice said it was the beginning of five months in the hospital with the baby.

Elise was 3 months old when she underwent her first heart surgery. Doctors used a piece of tissue to replace the malformed valve, but the tissue disintegrated and the valve still leaked.

“She had a significantly serious problem and was chronically sick,” said Armin Wagman, M.D., pediatric cardiologist and medical director of Pediatrix Cardiology in Springfield. “We had to do something.”

Elise’s heart and lung problems continued. Her oversized pulmonary arteries still interfered with her breathing, and her heart couldn’t efficiently pump oxygenated blood to the rest of her body. She was increasingly susceptible to respiratory infections.

At 16 months, Elise was still suffering from viral and bacterial infections, was in and out of the hospital, and had to inhale steroids every day to stabilize her lungs.

Candice winces when she recalls life as a young mother with a baby addicted to morphine, Valium and Versed. Doctors’ notes outlined complex instructions for weaning Elise off the drugs and treating her with methadone.

Although Elise eventually was released from the hospital, Candice had to take her home with documents titled “What to do if the infant is not breathing or turns blue.”

Candice never married Elise’s father and had little contact with him after the girl was born. She said her greatest support during those difficult years was her older daughter, Caravana, now 14.

As Elise got older, she was still so weak that many days she couldn’t go to school or had to go home early. She slept all the time, had so much pain in her legs that she had trouble doing physical activities, and had no appetite.

‘Like an old lady’

Elise’s story is filled with doctors’ notes recommending that she not be in day care, explaining her many absences from school, and stressing the importance of letting her rest during physical-education classes and not putting her “in a competitive situation.”

For years, Elise said, she “felt like an old lady,” not the vibrant grade-schooler she was. The pain was bad, but the morphine was worse, so Elise refused the drugs in exchange for a clear head.

“I couldn’t slide down the slide because it hurted a little,” Elise said as she demonstrated how she now uses the slide without pain. “And I couldn’t run because when I was running, my heart would beat fast.”

‘God’s clubhouse’

Through it all, Elise said, she wasn’t scared. One night, she had a dream that she went to the park with her mother and climbed up a ladder into heaven.

“‘Come up,’ God said, and I did, but then the ladder broke,” Elise said. “So, I got to be at God’s clubhouse and help him build another ladder. Then I told him that I needed to go back to be with my mom, and he let me. But he told me that someday I could come back to his clubhouse again.”

“I’m so glad that he let her come back,” Candice said.

“I was a lot more scared than she was,” she continued. “During those surgeries, I thought about all of it.”

A final surgery July 14 of this year changed everything. Doctors used an adult heart valve to repair Elise’s heart, and they cut her arteries down to normal size. She got to be a little girl again.

Wagman, the cardiologist, said it wasn’t a sure bet, but it paid off. It’s a difficult surgery, he said, and children still get lung disease even after the procedure. But in Elise’s case, the outcome was as good as anyone could have hoped, he said.

“There is no question, we saw a great improvement,” Wagman said. “This surgery went as well as it could have.”

After her last surgery, Elise started playing sports and took up skateboarding. She runs and plays, putting her friends out of breath. Her toothless smile flashes all over the playground as she climbs, hangs and flips around the equipment.

“I can do some tricks on my skateboard now,” she said smiling. “I feel a lot different.”

Doctors continue to monitor Elise’s progress, but they expect her to live a normal life. They check her heart regularly and think there is a chance she may have to have another heart surgery at age 20 to replace the valve one more time. But by that time, Elise hopes to be well on her way to her dream career: becoming a cardiologist herself.

“She wants to help other kids who are sick now,” Candice said. “We’re fighting together, and (Elise) is going to make it.”

Editor’s note: Candice Randall is an employee of the maintenance department of The Joplin Globe.

What it is

“Tetralogy of Fallot has four key features. A ventricular septal defect (a hole between the ventricles) and many levels of obstruction from the right ventricle to the lungs (pulmonary stenosis) are the most important. Also, the aorta (major artery from the heart to the body) lies directly over the ventricular septal defect, and the right ventricle develops thickened muscle.

“Because the aorta overrides the ventricular defect and there’s pulmonary stenosis, blood from both ventricles (oxygen-rich and oxygen-poor) is pumped into the body. Sometimes the pulmonary valve is completely obstructed. Infants and young children with unrepaired tetralogy of Fallot are often blue (cyanotic). The reason is that some oxygen-poor blood is pumped to the body.”

Source: American Heart Association