Many of our heart families have sadly lost their heart kids. Angels for Hearts began using the term “heart angel families” after Evan Boungnasiri passed away in January 2012. Evan was a heart kid who died when he fell off a playground ladder and hit his head. It wasn’t until later that the doctors determined that Evan had another underlying heart issue that caused him to go into cardiac arrest, which is what ultimately took his life.
Later that year his mother, Mandy, went online to register for our “When I Grow Up” event; the first question asked the name of the heart child. She could not bring herself to type Evan’s name as he was no longer a living heart child. Mandy contacted Angels for Hearts and asked how we could include language welcoming heart families who have lost a child due to cardiac issues to our events and programs.
We immediately amended all RSVPs to first ask the question, “Are you a heart angel family?” Our intention is to remind families: once a heart family, always a heart family.
To her surprise, Mandy later became pregnant and welcomed a rainbow baby named Avery. The entire family was tested for Evan’s underlying genetic heart condition called Long QT Syndrome (LQTS) and while it was determined they did not have LQTS, they did find that Evan’s older sibling has a form of cardiomyopathy called LVNC, and the Boungnasiri children now all have yearly heart check-ups.
What most heart angel families want people to know is that they want to remember and honor their children who have passed away and include them in the conversations. Children who have passed away are still very much a part of their family’s story. Angels for Hearts was founded by Kim Kaufman as her legacy, to continue supporting the heart community long after God calls her home.
Definitions:
Rainbow baby: A rainbow baby is a name coined for a healthy baby born after losing a baby due to miscarriage, infant loss, stillbirth, or neonatal death. The name “rainbow baby” comes from the idea of a rainbow appearing in the sky after a storm, or after a dark and turbulent time. The term also symbolizes hope and healing.
Long QT syndrome (LQTS): A heart rhythm condition that can potentially cause fast, chaotic heartbeats. These rapid heartbeats trigger a sudden fainting spell or seizure. In some cases, the heart can beat erratically for so long that it causes sudden death. Most patients with LQTS have a genetic mutation that puts them at risk of being born with congenital long QT syndrome. A lot of LQTS patients do not know they have the disease until a family member is diagnosed or dies.