A little heart makes a big impact

A story on a Heart Walk family from Medill Reports:

http://news.medill.northwestern.edu/chicago/news.aspx?id=170006


by Anna Lempereur
Oct 07, 2010

Colton Sullivan is a typical 6 year old who enjoys splashing through puddles, rolling in mud and digging for worms. As he ran around the field and wrestled with his brothers, Sam, 7, and Max, 3, you would never guess he had five heart surgeries and has his very own pacemaker.

Because of other birth defects, he has had four lung surgeries, two brain surgeries and two stomach surgeries. He has been admitted to the hospital more than 100 times and spent a total of two years of his life in the hospital.

Colton, of Shorewood, a small town just west of Joliet, was born seven weeks early with three different congenital heart defects: ventricular septal defect, patent ductus arteriosus and transposition of the great arteries, according to his mother Andrea Sullivan, 31.

Cardiac pediatric nurse practitioner Patricia Stapleton at Children’s Memorial Hospital, Chicago said ventricular septal defect and patent ductus arteriosus are among the most common congenital heart defects.

She said a child has a less than one percent chance of being born with congenital heart disease.

Stapleton said the cause of the disease is unknown, but it could sometimes be associated with genetic disorders such as Down syndrome, Edwards syndrome, Di George syndrome and Marfan syndrome.

“Children with some genetic defects have a higher incidence of congenital heart disease than the general population,” she said.

Stapleton said screening could sometimes be done before the baby is born to detect congenital heart disease, allowing time to know that surgery and intensive care may be needed.

Sullivan said there was no determination in the cause of Colton’s heart disease. She said he had no risk factors, no family history and no exposures.

“Advances in medicine and support from the heart association has really gotten Colton to where he is today. He’s a thriving, active, very healthy 6-year-old,” Sullivan said.

Colton and his family are members of Mended Little Hearts, an organization that unites families who have been impacted by congenital heart defects.

Mended Little Hearts Group Coordinator Jaime Olsen said she started the Chicago group in 2007 after her son, Tyler, was born with congenital heart defects and had open-heart surgery at 2 months old.

“The fear that you have as a mother, that your child has to have open-heart surgery to fix his heart is devastating…the emotions of just giving birth to a child and being just completely blind-sided by this,” Olsen said.

She said the Sullivans have been very active in the congenital hearts defects world.

“If you know Colton, you are a blessed person. He’s an amazing little boy and his family has such great strength. Colton is lucky to have the parents that he has,” Olsen said.

Sullivan said Colton’s most recent surgery was 11 weeks ago.

She said her son has been walking around showing everyone his scar from his recent surgery and his new pacemaker.“He’s as proud of it as can be. He’s not afraid to tell everybody, ‘This is my battle wound!’ One of these days I’m waiting to hear him telling his friends it’s a shark bite or something like that.”