CHD Advocacy

Since Zoey’s initial diagnosis in January 2016 I have become part of the “Heart Community”. I have become more aware of Congenital Heart Defects and the lack of awareness for it. I’m proud to be a Heart Mama to two amazing heart warriors (and to the beautiful Remi).

Receiving that initial diagnosis is terrifying. Everything you thought your pregnancy and delivery would be is out the window, you have more appointments, more monitoring, and no idea what the future holds. I already had two miscarriages prior to having Zoey. It never crossed my mind I would become an infant loss parent. Her diagnosis got more and more complicated with each appointment and hope was hard to find.

I am a researcher by nature. I want to find out as much information about something I can. So when we found out that Zoey had HLHS I scoured the internet for home. I came across many Facebook groups that catered to parents of children with congenital heart disease and specifically HLHS. I joined those groups, posted my story, and read other stories both good and bad. I connected with other moms in similar situations. Even after Zoey’s passing I stayed in those groups and followed other families through their heart journey.

As a grieving heart mom I knew I needed to do more to raise awareness for CHD after Zoey passed. That summer I did a Walk for Hope in Milwaukee with my mom in her memory, that’s when I first started this idea that I wanted to do more in her memory. I have purchased t-shirts for heart warriors and heart angels that have her name listed with many other brave kiddos. The proceeds from those shirts went to different heart charities or supported families still going through life with a child with CHD. I donated to the Ronald McDonald House every year for Giving Tuesday, and with my Amazon Smiles initiative.

A few years after Zoey passed, I started a flower and candy sale at my school leading up to Valentines day or more specifically Congenital Heart Disease Awareness Week which is February 7th- 14th. I started promoting it to students in January, giving up some of my prep and lunch times to do pre-sales of carnations for students to send to their friends. A colleague/friend had a connection with someone who owned a flower shop and gave us a great deal. We were able to buy them for $1 from her and sell them for $2 to the students. 50% off each sale went right to the fundraiser. I also sold candy hearts which I would buy for about $3 for a pack of 10, sell each box for $0.50. All proceeds from the candy sale went directly to the fundraiser as my extra donation. Whatever total we had I rounded up and donated extra. It was my way of doing something in her memory. Unfortunately it was not only in Zoey’s memory but two other teacher families also lost children to CHD. I am not alone in wanting to do more and raise awareness for such a deadly disease.

This year was the first year I did not do the fundraiser. With all of Ryder’s needs I wasn’t working at the school and didn’t do the fundraiser like I normally would. I have guilt that I don’t do more in Zoey’s memory like I want to. Not doing this fundraiser was like another piece of me is missing, on top of the identity crisis I am having by not being a librarian anymore. I have aspirations of what I would like to do and I hope I get to accomplish those goals one day, hopefully sooner rather than later. I want to create a non-profit that gives resources to families in need who are struggling with having a child with CHD. I also want to create bereavement packages for families that don’t get to bring their child home from the hospital. I have now been on both sides of CHD.

I have had two children with CHD, one whose body failed her and one who is thriving. I want to help families of all kind go through this incredibly tough situation. I’m struggling financially too, we are now only one income family and to start a charity now sounds crazy but I’m starting to work on what kinds of things I would include for these care packages for families. I feel the need to do more. I’m not the type of person to sit around and do nothing. I feel the need to do more in advocacy for CHD awareness for Ryder’s sake, for Zoey’s memory, for families struggling to get through these tough times, and for families who lose their children.

Even though my heart is telling me to start this charity, I am fortunate enough to raise awareness in a different way right now. Yesterday I was a guest presenter for a webinar for the Society of Pediatric Cardiology Nurses. I was invited by one of my favorite nurses at the Herma Heart Center at Children’s Wisconsin to give my perspective on the interstage period and going home after the Glenn. I had made the comment when we were leaving the second time that I felt less prepared going home after the second surgery than the first. After the first surgery you are constantly monitoring, on a strict feeding schedule, feeding restrictions, and hyper vigilant of everything. You are confined to a bubble to fight off germs and illness as much as possible because its the most vulnerable and high risk time for single ventricle babies. Its also extremely isolating for families. After the second surgery, there are very few restrictions, no strict schedule, and starting to do more “normal” things.

I was not at all prepared to leave my strict monitoring to be so relaxed. We only had a 5 day hospital stay with the second surgery, including discharged on a Sunday. Because of all of this the hospital reached out and asked if I was willing to present my unique parent perspective. I was so happy to participate. I do feel like I have a different experience than many parents because Ryder is doing so well, but I also have the other experience of not taking a child home for that interstage period. I was able to share both stories with a group of nurses who were incredibly encouraging and very thankful for my perspective. I have nothing but good things to say about our Children’s hospital and the care we received for both kids. But it was nice to share that while as a team we are so worried about the child’s care that we forget the the parents are often struggling with adjustments to being a parent to a child with complex medical needs. Those struggles can vary from person to person but to say its not a hard adjustment is an understatement. I think what made my perception unique was I knew kind of what to expect when we had Ryder because of our experience with Zoey. I already had connections with other parents who had gone through this, I knew the groups to belong to, I knew questions to ask, and more. But I still remember going through it all the first time and how scary it is. I mean honestly it was scary both times, but the second time I didn’t feel as alone as I did the first time.

I am excited to be involved in another collaboration with the hospital, other programs, and parents for an upcoming virtual conference this week. The theme will be focusing more about the Fontan procedure which Ryder will have in a few years. Its the third step for single ventricle patients. Its terrifying to think he still has so much ahead of him. I can’t think about it and have to focus on enjoying life with him now. But its not going to stop me from continuing to advocate for families, and raise awareness for CHD. Stay tuned, hopefully my efforts to start a charity will begin sooner rather than later.

These are the three stages of heart reconstruction for single ventricles, specifically for HLHS. These images are from https://www.heart.org/en/health-topics/congenital-heart-defects/about-congenital-heart-defects/single-ventricle-defects