Cecil toddler growing stronger and strongerPublished Mar 6, 2013 at 11:05 am (Updated Mar 6, 2013 at 11:05 am)
Jameson McKain, who was born with hypoplastic left heart syndrome, underwent open heart surgery in October, the sixth surgical procedure he's had since he was born Sept. 27, 2010.
Despite some setbacks in recent months, Jameson McKain continues to get stronger and stronger.
In October, the 2-year-old Cecil Township toddler underwent his sixth open-heart surgery at Children’s Hospital in Pittsburgh, where surgeons pulled an artery and vein off his trachea to improve his breathing. His mother, Danielle McKain, said his airway was more than 90 percent blocked.
“His trachea was the size of a coffee straw. It was supposed to be the size of a quarter,” Danielle said. “He couldn’t clear his throat. All the gunk was sitting in his upper airway. They pulled the innominate vein off his trachea and were able to clear his airway. He’s able to breathe and cough now.”
During the surgery, doctors also created a Gore-Tex valve to help repair some scar-tissue issues near a large blood vessel.
In January, Jameson returned to the hospital when he contracted a gastrointestinal virus that attacked his bone marrow and kidneys. Danielle said he’s now doing fine.
However, Jameson won’t return to preschool until flu season ends. It’s just too dangerous.
“Unless he has to go somewhere, we stay in,” Danielle said.
That’s because the youngster has no immune system.
Jameson was born Sept. 27, 2010, with hypoplastic left heart syndrome, meaning he had just two of four chambers of the heart. Danielle and her husband, Patrik, learned 18 weeks into the pregnancy during a routine sonogram their son would have to undergo several open-heart surgeries within the first few months of life, and even at that, his chances of survival were 50 percent.
When Observer-Reporter readers met Jameson in October 2011, he was recovering from a heart transplant. He takes medication to suppress his immune system to reduce the chances his body will reject the heart.
“When he gets sick, we stop the heart medicine. He needs his immune system back to fight viruses,” Danielle said. “We’ve been pretty lucky it hasn’t affected his heart.”
On Dec. 3, Jameson resumed in-home occupational, physical and speech therapy, and his appetite is much better. He’s starting to grow.
He tested at 20 months old for physical therapy, which, Danielle said, “is not bad for laying on your back for a year.” He tested at 12 months in terms of speech development.
“If he’s talking to you, he knows what he’s saying to you. I understand him because I’m his mom,” Danielle said. Jameson also talks to his big brother, Colin.
“Since his transplant, he’s been doing really well,” Danielle said. “He’s definitely coming along.”
The only “terrible” aspect, according to Danielle, is the weekly blood work, although Jameson never complains.
And even though the McKain home is well-stocked with medical equipment for Jameson, he’s not permanently hooked up to machines – he just uses the oxygen and undergoes breathing treatments on an as-needed basis. For instance, in October, his upper right lung collapsed.
Next on the medical agenda is a CT scan to evaluate his head circumference. The neurosurgeon is concerned; the cardiologist, Danielle said, seems to think it’s normal.
“Remember, he wasn’t growing for so long with a bad heart,” she said.
As Jameson continues to soldier onward, so does Jameson’s Army, an organization founded in his honor. The dedicated group of volunteers is quite busy, actively raising money and heart-health awareness via various fundraisers throughout the year.
On March 9, the Shamrock Shuffle, a 5K run and family walk, will be held on the Montour Trail at Cecil Park, and the second annual Green Heart Gala will be held from 7-11 p.m. April 12 at the LeMont restaurant in Pittsburgh.
This past year, Jameson’s Army partnered with the Children’s Home and the Lemieux Foundation to deliver “The Children’s Hometown Hero Luncheon,” and the organization participated in the 2012 Heart Walk, Meals From the Heart on Thanksgiving Day at Children’s Hospital and Heartfest, sponsored by the Meals From the Heart Foundation, which raises money to help children with heart defects. Jameson’s Army also supported other fundraisers, including a toy drive for local agencies that help those in need.
Jameson’s Army received some Hollywood attention as well. In December, Danielle’s longtime friend, Courtney Mazza, married actor Mario Lopez. The bridal couple suggested that guests donate to Jameson’s Army in lieu of wedding gifts.
In addition, the American Heart Association honored Jameson with the P.A.R.K. Award, given to a child who inspires others, and his parents received the Brave Heart Award at Isabella’s Celebrate Life Luncheon and Auction in Pittsburgh for their dedication to raising coronary heart disease awareness.
“Jameson’s Army has such an amazing team of people. I have a wonderful board of directors. They’re so hands-on,” Danielle said. “I’m so passionate about it, it’s so easy. It’s all very fun to me. It’s not bad for me because I’ve lived it for so long. It’s not always easy, but we’ve met a lot of parents who haven’t gotten a chance to take their kids home. I thank my lucky stars.
“It’s really hard to watch teenagers at the hospital who were born not knowing something was wrong. I feel blessed with Jameson. This is his way of life. He doesn’t know any different.”
For more information about Jameson’s Army, visit www.jamesonsarmy.org.