Where the Money Goes
The Herma Heart Center at Children’s Hospital of Wisconsin is one of the top programs in the world for treating congenital heart defects and children’s hearts disease. The facts speak for themselves – The Herma Heart Center has the best success rate in the world for the set of surgeries Anthony needs to survive.
The success rates of the surgeries performed at the Herma Heart Center and the cutting edge nature of the research being conducted there are astounding, to say the least. However, there is more to miracles that happen at the Herma Heart Center than can be told in statistics and facts. I think the depth of the life saving work being done there can only really be understood by hearing the stories of the children and families they save.
As if it wasn’t enough that the Herma Heart Center is actively saving my son’s life, they have done and continue to do so much more for families like mine, trying to navigate a new life living with the knowledge that their child’s heart doesn’t work the way it should.
I would like to share an experience that was a turning point for David and me in terms of our own ability to cope with our new found lives as parents to a child with complex heart defects. When Anthony was a tiny baby, days old, in the NICU, awaiting his first surgery and every day working harder and harder just to live, I remember telling Candace, one of the nurses on Anthony's cardiac team, how terrified I was of losing Anthony- if not then, then when he was 5 or 10 or 15. I told her I didn't know how we were going to be able to get through any of what was to come, that I was afraid we weren’t going to be strong enough or smart enough to give Anthony what he needed. And she said something to me that I will never forget. She said she knew we were overwhelmed by the uncertainty of our situation and that she wished they could take that uncertainty away but it just wasn't possible. But she said she could promise us something - She said that she promised that throughout whatever Anthony had to go through, we would never be alone. She promised that Anthony would receive the very best care and that whatever he needed, whatever my family needed to get us through this, we would have. And I remember thinking that that was a very big promise to make, but that it was all we had, so we decided to put all our faith in that promise. That promise has carried us through our darkest times and it is a promise that has been fulfilled in every way again and again and again.
Our oldest daughter, Sophia, literally watched as the newborn brother she came to take home was rushed to Children’s Hospital in an ambulance before her Dad or I had a chance to explain what was wrong. Over the next month, she watched her brother fight for his life and she struggled to understand. Anthony came home on oxygen and hooked up to heart monitors. Sophia couldn’t have friends over anymore because of the risk of infection. She couldn’t touch her brother without first sanitizing her hands. Sophia was in so much pain and was so afraid all the time, and we didn’t know how to help her because we were just as afraid. We sought help from the cardiac social workers at the Herma Heart Center who worked with the Child Life program to help Sophia cope with her brother’s heart condition and helped us support her through his surgeries and hospitalizations. Through their guidance and support, we saw Sophia go from being crippled by fear to a child thriving in the midst of what our family was going through.
This is just one of the many ways that the Herma Heart Center has gone above and beyond what we could ever expect them to do for our family. And we are just one of many families who have stories like this, stories about how the amazing staff at the Herma Heart Center helped their family reassemble itself from the ashes left by a diagnosis of congenital heart defects. These are the stories you are helping to make possible. This is the work your generosity supports.
