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'Mended Little Heart' recovering in North Fork

Tiffany Tuell

(Updated: Thursday, July 22, 2010, 5:15 PM)

16-month-old Jonathan is all smiles again

Jonathan Martin was like any other 1-year-old rambunctious baby boy when he went in for his 12-month check up with North Fork mom, Stacey Martin. But when his doctor detected a heart murmur, Jonathan's life took a sudden turn.

He was sent to Children's Hospital Central California to see Dr. Kenneth Jue, a cardiologist. Jonathan was diagnosed with aetrial septal deft and partial anomalous pulmonary venus return. That's doctor talk for a rare congenital heart defect.

He had a hole in his heart and two out of three arteries going to his heart were entering the wrong side of his heart. There were no symptoms but if it had gone undetected, his heart would have been overworked, eventually leading to heart failure.

"It was a shock," the 28-year-old mother said. "It was hard and it seemed like it kept getting worse. I tried to stay positive and was glad he didn't have anything fatal but the closer it came to his surgery, the harder it was to stay positive."

Prior to surgery, Stacey attended a meeting of the Fresno chapter of "Mended Little Hearts," a support program for parents of children with heart defects. The program offers resources and a caring support network with other parents who have survived the shock of learning a child has a heart problem.

"When Stacey attended our meeting we treated her like family," said Lisa Pinedo-Renwick, coordinator of the Fresno chapter. "We are one big family that are all completely different but have one thing in common -- that someone we know has congenital heart disease. We have all been in her shoes at one point and share the same fears and emotions. We are happy that Stacey received support before Jonathan's surgery."

"It was a little reassuring to know that there are people out there that understand what you are going through," said Stacey.

Jonathan entered the operation room with Dr. Edwin Petrossian at 7:30 a.m., July 6 at Children's Hospital, where the doctor found a second hole in his heart. Six hours later, the doctor announced the surgery a success.

However, Jonathan's little 23-pound body had a bad reaction to medication.

"He had tubes everywhere," Stacey said. "He would wake up freaking out and broke one of his chest tubes. I held him down during his fits. It was so sad, but once the drugs were out of his system, he slept for seven hours straight. Valley Children's did a really good job considering what he was going through."

The night before Jonathan's surgery and afterward, Stacey was able to stay at the Ronald McDonald House next to the hospital.

"The people there are really nice," Stacey said. "I didn't spend much time there but it was nice to be able to keep stuff there and have a place to shower. Volunteers came in to cook lunch and it was great to not have to eat hospital food and have a home-cooked meal."

Jonathan was in the hospital for six days with Stacey at his side. After his first two nights in the intensive care unit, Stacey slept in his bed with him until he was discharged.

Jonathan is now home making a speedy recovery.

"He's doing really well," Stacey said. 'He's up and playing. He's doing surprisingly well but gets sore because he overdoes it."

Though surgery corrected the defect, his heart will be closely monitored the rest of his life. Doctors are keeping an eye on his heart for scar tissue that could restrict blood flow but the long term prognosis points to the 16-month-old Jonathan growing up to be a normal, healthy boy.

"It's amazing what the doctors can do. I was lucky to have a specialized hospital so close and was also lucky they found the problem so quickly."

Mended Little Hearts began seven years ago in Fresno and now has 45 chapters across the United States. "Our mission is to provide hope and support to children, families and caregivers impacted by congenital heart defects in order to extend and improve quality of life," Pinedo-Renwick said.

The organization has support group meetings every other month and occasional social events for the families. The group provides care packages and resource packets in English and Spanish. "We also have an accredited visiting program to be able to provide support to families in the hospital like Stacey," Pinedo-Renwick.

Pinedo-Renwick said Stacey contacted the Fresno group by email through the national website. "I was able to relate to Stacey's needs as my son was born with transposition of the great arteries and had open heart surgery at 5days old, 13 years ago. He is now a thriving 13-year-old who has played soccer, run cross country and plans to join the swim team this year."

According to a Mended Little Hearts brochure, nine out of 1,000 infants are born with a congenital heart defect and up to 1.3 million Americans alive today have CHD, half of these under the age of 25.

Details: Mended Little Hearts, mendedhearts.org, Lisa Pinedo-Renwick, hrt4ty@sbcglobal.net.