Today we returned to the Cardiac unit where my daughter spent the first 9 and a half weeks of her life. She needed to have a test that required sedation, and due to her heart condition she needed to be closely monitored by a Cardiac anesthesiologist.
As we walked through the double automatic doors, we entered another world. It was like we walked back in time almost 7 years. I didn’t think it would affect me this way, but it did.
You may have seen the headlines. Last Friday, Jeni Stepien married her fiancé Paul Maenner in a beautiful ceremony near Pittsburgh, PA. Sadly, Jeni’s father could not walk her down the aisle because he had lost his life tragically years earlier. According to a New York Times article, Mr. Michael Stepien was shot during a robbery one night in 2006, and the Stepien family made the difficult decision at that time to donate his organs. Now, ten years later, Jeni requested to be accompanied down her wedding aisle by the man who received her father’s heart, Mr. Arthur Thomas, from New Jersey.
The New York Times reported that Mr. Thomas received the donated heart just in time to save him from the congestive heart failure he had been experiencing. The two families have kept in touch over the years through letters and phone calls, as they share an invisible and indescribable bond. However, Jeni had never met Mr. Thomas until the day before her wedding.
Reading the article about this story was emotional, and watching the ABC News video of the first time the two met made my eyes fill with tears. The moment when Jeni first feels her father’s heart beating in Mr. Thomas’ chest was captured, and it was overwhelming. The miracle of life and the magic of medical advancements merged to create this beautiful moment in time. Perhaps the most touching and tear-jerking sentiment of it all was the fact that a part – such an important and symbolic part – of Mr. Stepien was able to be there for his daughter’s special day.
As the mom of a child with a serious congenital heart defect (CHD), this story hit even closer to home. When my daughter was born on Christmas Eve 2010, she was immediately rushed to the NICU, and only a few hours later was transferred to a pediatric cardiac intensive care unit in a children’s hospital in another state. Her heart problem made it impossible for her tiny newborn body to do what it needed to do. She was hooked up to tubes, wires, lines and a ventilator to make up for the organ’s structural flaws. My heart was broken for hers.
My daughter is now five years old, and to date has had two open heart surgeries and many other procedures to keep her heart functioning the best it can. We know as she grows more intervention will be needed and there will most likely be at least one more open heart surgery in her future. For now, our daughter is doing beautifully, and we are grateful. This is something we will not take for granted.
Throughout our journey, I have seen what other CHD families have gone through. I have read and heard of countless stories of babies, children and young adults needing heart transplants for a second chance at life. In fact, during her second open heart surgery, my daughter received a donated human heart valve as part of the procedure. Being touched by our experience and those of others has opened my eyes to understand the fragility of life and to appreciate the true generosity of organ donation.
Jeni Stepien lost her dad tragically, but he was able to give the beautiful gift of a heart and life to Mr. Thomas. Thank you to Jeni and the Stepien family for their difficult and selfless decision to donate Mr. Stepien’s organs that night years ago. You have made a difference for more people than you know.
[This post has also been published on Sammiches & Psych Meds and The Mighty.]
I am the mother of 2 beautiful children, who happen to have congenital heart defects.
My daughter was born on Christmas Eve 2010. Although we knew prenatally that she had a heart defect, nothing prepared us for what we would experience. Within hours of her birth she was transferred to a cardiac intensive care unit in a children’s hospital in another state. She spent her first 66 days of life in the hospital, and by the time we got to bring her home she already had one open heart surgery under her belt. By eight months old she underwent her second open heart surgery, and by 20 months we were told it was time for a third. Luckily, we found a doctor who was able to do a procedure that would buy us time before surgery was needed. Today, at five years old, she is still doing great, although we know surgery is in her future.
In September 2015 I gave birth to our son. All prenatal scans showed a healthy heart and we were thrilled. However at two months old we found out that he, too, was born with two congenital heart defects. Although not as serious and emergent as our daughter’s, they were CHDs nonetheless. Bubble burst.
At this point I am still trying to wrap my brain around the fact that I have TWO children with CHDs. At our son’s last cardiology appointment I had to ask the doctor directly if his heart issues were considered congenital heart defects, even though I knew they were. I needed her to say it out loud. I am sure this is a defense mechanism and my mind doesn’t want it to be true. I am slowly coming to terms with this fact. It is not easy.
To help me process my feelings, I sat down and penned an article about what it’s like to be a “Heart Mom”. I submitted it to The Huffington Post and The Mighty, and both sites published it! You can read my article at the links below.
HuffPost Parents – “I am a Heart Mom: What it’s Like to be the Parent of Children with Heart Issues”
The Mighty – “6 Things You May Not Know About Moms of Kids With Congenital Heart Defects”