Megan Perkowski is a 30-year-old woman who was born in January 1984 with tricuspid atresia, an atrial septal defect, a ventricular septal defect and pulmonary vein stenosis. Megan has undergone numerous medical procedures, including several cardiac catheterizations and 7 heart operations. She is now on permanent supplemental oxygen due to lack of blood flow caused by major scar tissue.
Megan attended traditional public school from the time she was three years old. Megan’s mom informed school administrators, teachers and school nurses of her conditions. It wasn’t until middle school that Megan began to experience much bullying. By high school the bullying had escalated from verbal to physical abuse.
Megan withdrew from public high school but finished her degree through her town’s adult education. She graduated in 2002 from high school and in 2008 obtained her Registered Medical Assistant certification.
Nancy Jensen, and her husband Karl, have 3 heart-healthy sons and Jessica, who was born with tetralogy of Fallot, pulmonary atresia, severe pulmonary artery stenosis, non-confluent pulmonary branches, major aortopulmonary collateral arteries (or MAPCAs) and DiGeorge Syndrome.
Jessica was very “blue” her whole life because, despite 5 heart surgeries, she never had a complete repair. Jessica became oxygen-dependent about 7 years old and needed a motorized wheelchair at age 9 because walking became too difficult for her.
Jessica had 2 strokes, which greatly affected her development, but she eventually mostly recovered from the strokes, surprising all of the specialists. Jessica started school at 3 years of age and graduated from high school in 2008.
Sadly Jessica passed away on Oct 4, 2010. Although she wasn’t expected to survive childhood due to the severity of her CHDs, she amazed everyone by being a happy, loving person who survived to be 22 years old despite all her medical issues.
Lisa O’Connor is a Special Education Advocate representing both children and their parents as they navigate through special education. She lives in the greater Boston area and received her training through the Federation for Children with Special Needs. She is also a Court appointed Special Education Surrogate Parent (SESPP), representing children that are in State custody, overseeing their education. Through her experiences she has met many families of children with CHDs that seek guidance in education due to developmental delays, learning disabilities and their needs for accommodations. She has found rewarding pathways that enable these ‘warriors’ to fully access the school environment safely. She is well versed in Special Education Law, Individualized Educational Plans (IEP), Accommodations (504) and Individual Health Care Plans (IHCP/EAP), all of which students are entitled to. Every child is unique, as are their heart defect(s). Through her advocacy, she aims to share her knowledge and experience with the heart community for the benefit of children with CHDs. She can be found on Facebook at: “Special Education Collaborative Consulting”
Links Mentioned in our Show:
Other Helpful Resources: