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Heart of a Fighter

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Heart of a Fighter


POSTED February 20, 2013 8:50 a.m.
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A pregnancy is normally a time of great expectation for most couples. But for Wesley and Lisa Richardson of Ceres, the news that their baby's heart hadn't fully developed at 20 weeks prompted a flood of worries as doctors to suggest an abortion as their best option.

It was an unthinkable prospect to Lisa and Wes.

"It wasn't a hard decision -- we told them we did not want to terminate at all," said Lisa. "We wanted to give her every chance we could."

Roughly half of parents who are informed their baby has a heart defect and will likely suffer from learning disabilities or behavior issues will choose to terminate the pregnancy. Today when they look at Cemaia, a happy, bright and well-functioning baby girl who jabbers as she plays with toys on the floor like most 14-month-olds, they know in their heart that they made the right choice.

A set of miniature pink-colored boxing gloves has become a family heirloom and symbol for the Kinser Road couple. The gloves were props used in pregnancy photos since the couple knew their baby had a fight ahead of her. Medical problems will dominate the girl's life. Cemaia is one of 40,000 babies born annually in the United States with Congenital Heart Disease (CHD). Afflicting one out of 100 live births, CHD is the leading cause of all infant deaths. Each year more than 4,000 CHD babies will not live to see their first birthday. Cemaia not only defied a Hayward cardiologist's prediction that she wouldn't survive birth, but she made it past her first birthday on Dec. 31.

"My baby is happy, chubby, and rosy-cheeked," said the 29-year-old Ceres mother. "She appears healthy until you see her chest full of scars -- scars of the incision that spans from neck to belly button, chest tube sites, and pacing wire scars."

Cemaia has Hypoplastic Left Heart Syndrome, or HLHS. It is a condition where parts of the left side of the heart - such as the mitral valve, left ventricle, aortic valve and aorta - did not completely develop while in the womb. The condition causes the left side of the heart to be incapable of sending enough blood to her body. As a result, the right side of her heart must maintain the circulation for both lungs and body. The right ventricle can support the circulation to both the lungs and the body for a while, but this extra workload eventually causes the right side of the heart to fail. The only possibility of survival is a connection between the right and the left side of the heart, or between the arteries and pulmonary arteries (the blood vessels that carry blood to the lungs).

Two heart surgeries and a heart catheter later, Cemaia is doing well but will need another surgery, probably sometime around her third birthday, to reconstruct the aorta arch. The older she gets the stronger her immune system will become, said Wes, but for now the couple is careful to shield Cemaia from illness since her heart cannot handle much stress.

Thrust into a medical world with their daughter's condition, the Richardsons want to educate the public about CHD. They were shocked to learn that while CHD kills twice as many children than all forms of childhood cancers, funding for CHD research is a fifth of what's spent on pediatric cancer research. That may be due to public misconception that surgery will "fix" the problem.

"There isn't a cure for CHD," said Lisa. "My baby cannot be fixed. This disease, even after multiple heart surgeries and interventions, will not go away. My daughter will live with this forever. And forever is relative."

Lisa recommends that all pregnant women should ask about their baby's heart during the 20-week sonogram, saying half of heart defects remain undetected during pregnancy. That preparation allowed the Richardsons to plan for the birth at Stanford Medical Center since the Modesto area is unequipped to handle such severe heart defects. An oximeter test should also be asked for to aid in detection.

Women should seek out doctors who are less eager to encourage terminations, the couple recommends.

Wes, a 35-year-old Dot Foods warehouse worker, said he tries to focus on his daughter, not her disease. But it's always present.

"We hope for a lifetime and we pray for just another day."

The couple belongs to support group that rally around parents. One such website is sisters-by-heart.org.

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