Maryn was born in March of 2013, looking surprisingly healthy for having been diagnosed in utero with rare congenital heart defects (Truncus Arteriosus, a VSD & an ASD). Maryn had her first open heart surgery at 9 days old, a couple of weeks later it was apparent that her heart was still not working as it should, forcing her second open heart surgery when she was 4 weeks old. Maryn's second surgery seemed to be the key to getting Maryn home, but something still wasn't right and she remained in the hospital.
In the beginning of August 2013, Maryn was evaluated for a heart transplant, although it was determined she was not a candidate due to her 22q11.2 Deletion Syndrome and her over 40 blood transfusions. Unfortunately, her health continued to deteriorate. Thursday, August 29, 2013 our world came crashing down.
August 29, 2013, the Thursday before Labor Day Weekend, started out like any other day that Maryn was in the hospital. I dropped Bram off at my friend Christy’s house (I don't know how we would have survived Maryn’s 218 days in patient without Christy), went to rounds in the PICU, and hung out with Maryn. She was sick, sicker than she had been before, we knew that. She had an unexplained, incredibly high fever, high heart rate & was lethargic. Once Nate had gotten to the hospital, the medical team asked us to have a family meeting. While I can't remember the details of that meeting (I was in a daze) I can distinctly remember Dr Boyle (the heart failure/transplant doctor) telling us that there wasn't much else that the team could do for Maryn. He told not to expect Maryn to survive the weekend; if she did survive, and was healthy enough for surgery, her medical team gave her a 5-10% chance of surviving the double valve (aortic & pulmonary) replacement she needed. As I look back at what I wrote on our Caring Bridge page I realize just how good I got at compartmentalizing the medical "stuff" and my feelings as a mom. It was so hard to hear, yet I could write her medical update all while trying to protect myself and pulling away emotionally from her.
I'll never forget the love and compassion I felt from Maryn's nurse, Kate, and RT Nikki that day.
I'll forever be grateful to my parents, my sister, Nate's sister, and his two best friends who jumped in their cars/on planes to be with us as soon as they heard.
I'll forever be grateful for Dr Stewart and his "rose colored contact lens" and Dr Pra as they were the ones who didn't let us give up hope, they were the ones that knew that Maryn had a greater purpose and that we needed to push on.
I'll never forget the look of my shaky signature on the specified DNR form - Nate had signed for all of her surgeries, but just couldn't sign the DNR, so I did it (compartmentalizing again). We were at the point where I wanted to make sure we were doing everything FOR Maryn and not TO her. At that point, chest compressions and cpr would have been for our benefit, not hers and I knew I wanted her to die in my arms, not with someone fruitlessly doing compressions. At that point I had arranged her funeral in my head - I had the songs, readings, etc picked out. At that point I knew we would cremate her little body and keep her with us, I couldn’t bury her because I couldn’t leave her behind and there would be no way we would be staying in the Cleveland area after her death.
Today, nearly 8 years after we were told Maryn merely had days, possibly hours to live, have watched her thrive through Covid, being the healthiest she's ever been and loving virtual school. I still can’t believe she is starting 2nd grade!
Maryn is hilarious, stubborn, dramatic, brave, and loving. She has a way of getting those around her to do EXACTLY what she wants them to, a trait that we should have seen even when she was in utero! I can't imagine what our life would be like without her, or all of the drama she's brought to it.
This miracle that we witnessed, the amazing medical technology and decision making, THIS is just one of the reasons we walk for the Cleveland Congenital Heart Walk. The research, technology, and education provided by the Children’s Heart Foundation is invaluable. With continued research, technology, and education, I hope and pray that other parents do not have to experience what we did on August 29, 2013.
Please support our team, join us for the Congenital Heart Walk, or both!