Small Hearts – Big Challenges
Heart disease is the No. 1 killer in Louisiana and in America. Heart disease does not discriminate against age, race or gender. Heart disease kills more women each year than all forms of cancer combined. Unfortunately, the killer isn’t easy to see. Heart disease is often silent, hidden and misunderstood.
The truth is that heart disease is not an old man’s disease like so many believe. Even the smallest hearts have big challenges. The number one birth defect in the United States is congenital cardiovascular defects, also known as congenital heart defects (CHD). The incidence of CHD ranges between 4 and 10 per 1,000 live births. Tragically, more than 1,600 of them do not live to celebrate their first birthday. Beyond the terrible death toll, physical and mental suffering and lost potential and productivity that CHD causes, it also comes with a steep price tag. In 2004, hospital costs for all individuals with CHD totaled $2.6 billion.
But there is still real reason for hope. Due to research, more survive to adulthood, including many who formerly would have died. The prevalence of congenital cardiovascular defects has increased strikingly in both adults and children due to increased survival.
A recent American Heart Association study shows that
• Severe CHD rose by 85 percent in adults and 22 percent in children from 1985-2000.
• As of 2002, it was estimated that 650,000 to 1.3 million Americans had CHD. More recent studies show these numbers could be increasing.
• CHD are about 60 times more prevalent than childhood cancers.
Although the mortality rate for CHD has sharply declined since 1994, CHD is still a major killer. Nearly one in three infants who dies from a birth defect has a heart defect.
GRAYCEN TAYLOR BOND: TRANSPLANT CANDIDATE, 2
Little Graycen Taylor Bond, daughter of Melissa Taylor and Marc Bond, turned two in September but although she appears to be a normal child she has struggled to survive since she was born. Graycen was born with a heart defect, which was diagnosed as Hypoplastic Left Heart Syndrome (HLHS) before she was born.
This diagnosis meant that half of Graycen’s heart was small and underdeveloped. When the chamber is small and poorly developed, it will not function effectively and cannot provide enough blood flow to meet the body’s needs. For this reason, an infant with HLHS is in a very critical situation.
“When we heard the news I immediately thought my baby was going to die,” says Bond. “I thought birth defects were a deformity. I never even thought about something being wrong with her heart.”
The Bond family knows well that heart disease knows no boundaries with a family history of the disease through many generations. Graycen’s mother has been diabetic since she was just 10 years old, and her father suffered from a heart attack at 42 years old. The family history continues as Graycen’s grandparents on both sides have had open heart surgery, heart attacks and stroke.
The reality of Graycen’s condition did not settle in for her parents until her first open heart surgery at just two weeks old. Graycen was in the hospital for the following three months. Then at just six months old, Graycen was back for her second and third surgeries within days of each other. If that was not scary enough, Graycen’s oxygen levels dropped so low that she turned blue and her parents thought she was going to die. But Graycen is a fighter. She recovered from the surgeries and went home.
“We had waited our entire life for her and she has been worth every second,” says Taylor, who is being strong for the entire family.
On January 4, 2012, while at home with her family, Graycen aspirated, had a stroke and coded. Through her recovery from this episode, she contracted a series of infections because of her low immune system. One of these infections was fungal with an 80 percent mortality rate for infants. But Graycen stayed strong and once again returned home.
In June after the discovery of a clot in her heart, Graycen started to have congestive heart failure. With the right side of her failing, Graycen needs a heart transplant.
By the age of two, Graycen had spent nine months of her life in the hospital, which has put her behind developmentally. She started crawling a month shy of two years old and is still fed through a feeding tube. But if you were to look at her you would not know just how sick she really is. Her parents say that she loves to dance to the “Wiggles” and “Sesame Street.” That she is always smiling until she sees a doctor. When Graycen sees a white coat, even at the pharmacy, she is scared, fearing a shot or having blood drawn.
Currently there are no Louisiana hospitals that perform heart transplants on infants. The family relocated to a Birmingham, Ala., apartment where they will remain until Graycen is well enough to return home to New Orleans. Right now, she is in a hospital room at Alabama’s Children’s Heart Center awaiting a heart to become available to her.
The family keeps faith on the statistic that, the longest a child Graycen’s age has had to wait for a transplant is 10 months with a recovery of 6 months to a year.
This time next year her parents hope that she is home, walking and playing with other children. Their goal for her is that she can stay out of the hospital for an entire year.
Heart disease is a part of Graycen’s story, and it has shaped her personality to be a strong, happy baby who is fighting with all of her might to see her third birthday.
“I think about her growing up to be a doctor or a nurse,” says Bond. “The doctors and nurses who have cared for her have used their skills and talents to keep her here with us. Perhaps she can do that for someone else.”
With so many parents and babies affected by CHD, the Bond family says as their advice to other parents is to stay strong, keep your faith up, rely on prayer and surround yourself with a support system.
“We are coming home to New Orleans with Graycen and her new heart,” says Bond. “New Orleans is our home, and our entire life is there.”
To learn more about Graycen’s story visit graycensgift.com.
JOIN THE FIGHT
Each day the American Heart Association is working on research to help understand and prevent heart disease and CHD. The New Orleans American Heart Association will host the annual Go Red for Women luncheon in February 2013.
The Go Red for Women campaign is more than a message. It’s a nationwide movement that celebrates the energy, passion and power we have as woman to band together to wipe out the No. 1 killer. Grandmothers, mothers, daughters, sisters and friends are dying at the rate of one per minute, because they don’t know that heart disease kills.
Through awareness and prevention heart disease can be prevented. Heart disease has already touched you or someone you love, so help us save a woman’s life and be a part of Go Red for Women New Orleans.
Go Red for Woman is sponsored by Macy’s, Merck, Peoples Health, Tulane Medical Center, UnitedHealthcare, and Sheriff Newell Normand. For more information visit heart.org or visit the New Orleans American Heart Association on Facebook, facebook.com/AHANewOrleans.