Max: The Heart of the Matter
To see 9-year-old Max Hammerstrom, now you’d never guess he was a sick baby. And not just a little sick, but very sick. Today, however, the only evidence of his rocky start is a faint scar where a surgeon opened his tiny chest to fix the hole he was born with in his heart.
Good luck getting him to slow down long enough to take a peek at it. Max is a pretty busy guy these days running around with friends and skateboarding up and down the street in his South Park neighborhood.
But this hole – called ventricular septal defect (VSD) – was serious business.
“I knew there was something different about him; I knew something wasn’t right," said his mom, Jerilyn Hammerstrom. “He was a sweet, yummy baby, but he seemed pained.”
Diagnosed with a heart murmur at Rady Children’s Heart Institute when he was just 2 months old, Max was sent for X-rays that detected an enlarged heart. Then the hole was discovered.
“Getting a diagnosis like that is pretty scary,” she said.
In fact, the first year of Max’s life was pretty scary. While at home on a heart monitor, Max turned symptomatic. He even stopped breathing on two occasions.
In children born with VSD, doctors can take a wait-and-see approach, as many times the hole can stitch itself together, given the time to so do.
“Depending on the location of the defect, the tissue around it will grow over it and close,” says Max’s cardiologist, Dr. Paul Grossfeld. “In general, a certain number of holes over time will partially close off so surgery will not be required. But (with Max), the hole was large enough that we couldn’t wait.”
Time for open-heart surgery.
Jerilyn says there was a certain sense of relief but, “There are two sides to it. The ‘Oh, my gosh please fix him’ and then ‘Oh, my gosh he’s my beautiful baby boy,’ and you know they’re going to open his chest.”
The heart has two sides – left and right – and four chambers. The upper chambers are the left and right atrium. The lower chambers are the left and right ventricle. Between the two sides is a muscular wall called the septum.
With each beat the heart receives, blood that is at the end of its journey circulating throughout the body goes back to the lungs to be oxygenated, and the heart pumps the refreshed blood back into the body. To do this, blood enters the right atrium, and then goes to the right ventricle where it travels through the pulmonary artery to the lungs. Oxygenated blood heads back to the heart through veins that carry it to the left atrium, which sends it to the left ventricle. From here, the oxygen-rich blood is returned to circulation through the aorta.
In children who are born with VSD, there is a small opening – a hole -- between the two lower chambers that allows oxygenated blood to be sent back to the lungs instead of on its way around the body. This causes the heart and lungs to work harder than they should and can lead to damage and, if not corrected, failure.
So, while Max’s heart was working to keep his body going, it wasn’t letting him do much else – like grow. At 14 months he still had no hair or teeth, his fingernails wouldn’t grow, and he wasn’t filling out like other children his age.
To repair the hole, a surgeon uses a piece of pericardium tissue – the thin membrane that surrounds the heart – or synthetic Gore-tex as a patch. Eventually, new tissue covers the patch and the repair is permanent. That’s what fixed Max’s heart, and, today, he’s got a clean bill of health, which is exactly what’s to be expected, says Dr. Grossfeld.
“With a case like Max’s, where surgery is needed, it’s usually a very optimistic prognosis,” he says. “It’s a major setback to have open-heart surgery, but he should have a normal life and grow up fine.”
Dr. Grossfeld is working to understand what causes this common defect. Through research with the Rady Children’s Heart Institute, he hopes to develop more therapeutic and preventive measures.
“I spend two-thirds of my time studying congenital defects, and we know VSDs are due to a genetic cause,” he explains. Researchers believe there is a population of cells that start in the embryo and migrate, but due to a genetic defect, the cells meant to go to the septum are prevented from getting there. “Further study will allow us to prevent the gene being passed down.”
Congenital heart defects are not that unusual -- about one in 100 children are born with one, and VSD is one of the most common.
“It’s one of the most common defects we do open-heart surgery on,” says Dr. Grossfeld. In the future, however, doctors may be able to correct the problem using a device deployed with a catheter.
“It’s a one-day procedure and avoids open-heart surgery,” he said. “We’re working on refining the procedure and hope the majority of patients will have holes closed without requiring open-heart surgery.”
After going through their ordeal with Max, his family – including dad Brad, and big sisters Greta, 11, and Gracie, 10 -- found out how all too common congenital heart defects are when neighbors right across the street discovered their own son, Jake, was facing sinus venosus atrial septal defect at 18 months old. Today, Jake is also the picture of health, and the two families got together three years ago to create Max and Jake’s Big Race, a 5K and 1-mile run and walk held in January at Mission Trails Regional Park. The event raises money for Rady Children’s Heart Institute.
“We’re two different families who went through this whole thing and came out with these great kids,” said Jerilyn. “We just wanted to say thank you to the staff, doctors and resources at the hospital.”
The race has raised more than $75,000, which has been used to purchase an echocardiogram, a fetal echo-exam table, and echo-ready station and cardiac patient visits for those who can’t afford them.
“We couldn’t have done it without all our friends, family and neighbors who do the race every year,” she said.
The San Diego Union-Tribune Kids’ News Day, October 2009