Miracle Girl

By Renee Wahlen Tillema

The words courage, determination, strength, and resolve are all words that may conjure up images of power, muscle, and force, but instead these words are all used to describe one 48-pound, nine-year-old little girl. She has become a leader among her peers and a fighter since the day she was born.

Lucy Bell may only be in the third grade, but she already has a wisdom and insight that rivals those twice her age. Lucy has put a face to heart disease and has given a voice to the thousands of children born each year with heart defects.

Born in October of 2001, Lucy has already undergone almost 20 surgeries, most of which occurred in her first few years of life. Lucy is the daughter of Molly and Pat Bell, and the granddaughter of Dr. Joe and Jeanie Militello who live in Beaver Dam. Lucy, her parents and her two siblings, Katie, 7, and Joey, 5, live in the state of Oregon. Their story was featured in the November 2004 issue of InSpire Magazine. The Bell family was in Beaver Dam during the Thanksgiving holiday and the staff of InSpire thought it was time to catch up with Lucy and her family to see what has transpired in the last six years.

Lucy was the first child for Molly and Pat. The pregnancy, delivery and first two weeks of Lucy’s life had been textbook. At Lucy’s two-week checkup, a heart murmur was detected, and further testing and examinations revealed that Lucy had been born with Tetralogy of Fallot and Pulmonary Atresia. This congenital heart defect causes less blood flow to the lungs, low levels of oxygen in the blood and the mixing of oxygen-rich blood cells with oxygen poor blue blood cells inside the heart.

The first surgery of many was when Lucy was just three-weeks old. While the surgery itself went well, Lucy went into cardiac arrest in the ICU. The cardiologist massaged Lucy’s tiny little heart for 32 minutes before it was able to beat on its own. Several more surgeries followed. Lucy’s first Thanksgiving was spent in the hospital, and for many months after, Molly and Pat’s lives were consumed with doctor appointments.

Those doctors, who have grown quite fond of their young patient, monitor Lucy closely. In November of 2010, she had just finished a 24-hour recording of her heart activity with a Holter monitor. Lucy explained, “I was supposed to exercise a lot so they could see what happens to my heart when I exercise. It was not real comfortable because they put stickers on and it itched.”

At some point Lucy will need to have a heart valve replaced and both family and the doctors are hoping that this surgery will be able to wait until Lucy is an adult, because it would only need to be done once. If the valve does need replacing sooner, Lucy will eventually outgrow the smaller valve and need additional surgery during adulthood.

“Other than that, Lucy is doing quite well,” said her grandfather, Dr. Militello, who has been following Lucy’s progress with both medical and emotional interests. “She does fatigue faster than other kids her age in physical activities, although it doesn’t stop her from playing soccer and other sports.”

Lucy’s father, Pat, listed the many activities his daughter is involved in – soccer, basketball, softball, dance, ballet, dance team, piano — and it sounds like the schedule of any other nine-year-old.

Memories of those many different surgeries seem distant as Lucy curls up on her grandparent’s couch with a book in hand. There have been no residual effects from all the medical interventions during her early years, Lucy is bright, articulate and participates in gym class just like all the other students. She is a voracious reader with a goal of reading 500 minutes a week.

As parents, both Molly and Pat unfortunately learned more about the workings of the human heart than most people outside the medical profession. They have supported organizations that promote research on congenital heart defects. Molly explained that nearly twice as many children die each year from congenital heart defects than from all forms of childhood cancer combined and yet pediatric cancer research receives five times more funding.

While in kindergarten, Lucy met Oregon’s Governor Ted Kulongoski on the day he declared Congenital Heart Defect Awareness Week in Oregon.  Over the years, Lucy has been asked to help educate and offer hope to other families who have had children born with a heart defect. She has been featured in literature for the Children’s Hospital at Legacy Emanuel to help promote good health and encouragement to other families facing medical challenges. Lucy recently became a poster child for the American Heart Association’s Go Red campaign and is one of the youngest Ambassadors for the AHA.

“She is a good role model for other families who have children born with heart defects, to see that they can and do grow up to be normal, healthy children,” Dr. Militello said. “The big issue is that she’s not a ‘heart baby,’ she’s a normal child. They get labeled as fragile, but it’s almost like that was something that happened in the past, even though we know there are other things in the future.”

When asked if, as parents, they will ever stop worrying, Pat replied, “It’s always in the back of your mind. It’s something you always keep an eye on. When I’m coaching, it’s always there when I’m watching her running, playing, falling.” Molly explained that she usually does not sleep the night before one of Lucy’s doctor’s appointments.

Jeanie, Molly’s mother, was recently able to talk with a local woman who was going through something similar with a newborn family member. She said, “What can you do but listen? It’s hard to watch your daughter go through that. All I could do was listen and cry with her. The road ahead is a real roller coaster.”

The Bell family has been involved with getting an AED (automated external defibrilator) installed at the school the children attend, they support the annual jump rope for heart, and a jogathon at their school. As parents, Molly and Pat make sure all of their children, not just Lucy, learn habits that will be heart healthy. They eat well, take good care of their teeth, exercise, have a limit on the television and have plenty of time to be outside moving around.

With two other children’s needs to be met, Molly and Pat have worked hard to ensure that all of their children receive equal attention. They have created an atmosphere of openness and honesty, always explaining and educating why Lucy might have certain needs that are different from the others.

“Lucy knows she’s special, but the other two know they are just as special,” Pat said. “We have dates with everybody where we spend time with them individually.” Molly added, “She gets a lot of attention, but it doesn’t go to her head.”

While the first few years of Lucy’s life were predominantly filled with doctor appointments and hospital stays, the Bell family has now been able to fill their days with piano recitals, sporting activities, school events and family dinners. Fortunately, those “normal” family appointments have taken precedence over the medical appointments.

“It’s amazing how far medical science has come, the kids that used to die can now live healthy normal lives,” Dr. Militello said. “You always hope for a cure, that they will find out what caused this, so that other families don’t have to go through what we’ve gone through, and those kids that do have heart defects, hopefully they’ll have the answer for them. We are very hopeful about the future.”

So, with the past behind them and the future still unknown, but hopeful, Lucy’s family enjoys what they have, the present time with these three active and happy children. Looking at Lucy is a reminder that every single minute of time is a gift. 

“The odds were stacked against her for the first few years,” Pat said. “She’s our miracle baby, actually all three of them are miracles, Lucy’s was just a rougher road.”