UCSF Children's Hospital | Monae Marestin

By Sandra Lema, American Heart Association

Reprinted with permission.

Watching Monae Marestin chasing her big sister around the room in their Roseville home, no one would ever guess the medical miracles that make it possible.

This giggly bundle of energy has beat the odds several times in the mere 3½ years since her birth. Monae remains undefeated, surviving a string of heart surgeries and battle against cancer. Considering what the young child has gone through, nothing is taken for granted.

"This year we are enjoying doing everyday things we haven't been able to do before," said Monae's mother, Caprice Marestin. "Little things like walking around the block, going to the lake, splashing in the pool."

Pierre Marestin, Monae's father, is overjoyed to finally be in a home with two typical young daughters playing together. Big sister Breanne is just 13 months older than Monae.

"You can see all this hasn't slowed her down much, Monae is the pushy one, running after her sister," dad said. "They are pretty typical as far as sisters go."

This week the Marestin family was preparing for the 12th annual Sacramento American Heart Walk at William Land Park in Sacramento.

This is nothing the family takes lightly. Last year, Caprice and her sister Cameo James were among the top individual walkers in the event, raising some $8,000 for life-saving heart research. Family and friends will walk again this year in tribute to Monae and her unbelievable journey.

Monaes life had a normal beginning on April 14, 2000. She was a full-term, seemingly healthy baby, who weighed nine pounds, one ounce.

"We had no idea there was anything wrong with our little girl," Caprice said.

That notion changed quickly. At 2½ weeks in a well-baby checkup, the pediatrician determined Monae had not gained any weight and checked her thoroughly. As the Marestins were about to leave, the doctor asked to check her heartbeat again.

"As I stood there holding my baby, the doctor listened and then looked up at me to say she thought she could hear a heart murmur," Caprice recalls. "I looked at my baby, with tears in my eyes, only to realize that she was turning blue right then. They quickly checked her oxygen level - it was 60 and dropping.

A series of emergency consultations resulted in the child being sent to the University of California, San Francisco, where they specialize in pediatric cardiology.

Monae was diagnosed with multiple life-threatening heart defects and within 12 hours of arriving had her first open heart surgery at a mere 2½ weeks old.

The procedure, known at PA Banding, was performed to adjust the blood flow in her heart. Two hours after the surgery, Monae required an emergency band adjustment. She was in the hospital three weeks and the Marestins went home facing the reality of more heart surgery to correct the flaws in their daughter's heart.

The next open heart surgery was at age 6½ months. A Glen Procedure was performed and went well. This time Monae was hospitalized for only six days.

They family went home again and tried to live life as normally as possible while continuing to visit the cardiologist frequently for checkups and routine tests.

Nearly a year after the second surgery, a third one was performed. At 16 months, Monae underwent the Fontan Procedure. What is normally a five-hour surgery turned into a 10-hour ordeal.

Monae also required a Fenestration, which releases blood flow when pressure builds up within the heart. Surgeons had to go back in two days later to adjust it.

"Everything was very tentative," Caprice recalled. "They left her chest open with the thought of needing to go back in and tear down the Fontan, only to put her back the way she was when we first arrived."

Overall, Monae's chest remained open for six days. She was fighting off infection and barely hanging on to life. On the sixth day, the doctors told the Marestins they needed to go in and adjust the Fenestration one more time, then close her chest for fear of more infection.

Monae began to improve; yet more bad news was on the horizon. Several weeks later a CT Scan was scheduled to try pinpointing the cause of her infection. The scan revealed what doctors believed was an abscessed cyst in her abdominal area. Surgery to remove it revealed a solid mass the size of a golf ball.

After the surgery, Monae's oxygen level dropped dramatically and doctors determined she had a blood clot in the Fontan shunt and her fenestration needed to be closed by another heart catheterization.

"The risks were great," Caprice said. "There was a real possibility of a stroke, but we had no other options available."

Slowly, Monae showed signs of improvement. But then doctors called a family meeting and delivered the devastating news. The mass removed from Monae's abdomen was a tumor - a rare form of cancer called Rhabdomyosarcoma.

That ignited a 48-week protocol of chemotherapy on Oct. 3, 2001. After 5½ weeks at UCSF, it was time to finally go home. The chemotherapy was completed in Sacramento on Aug. 29, 2002.

"The cancer thing really set back her recovery from the heart procedures," Caprice said. "But she is really doing well now. She finally has energy to enjoy life."

Monae's medications are closely monitored and she may face more surgeries as she grows up. Her parents are active in a support group for families of children with congenital heart defects - The Children's Heart Fund Family Network. It includes some 75 families in the Sacramento area.

"We are so grateful for organizations like the family support network and the American Heart Association," Caprice said. "If Monae was born 10 years ago, she simply would not have survived. Now the procedures that saved her life are fairly common."

Story written in September 2003.

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