Paul’s Story

In September of 2020 we welcomed our heart warrior, Paul, into the world. At just 2 days old, Paul underwent his first surgery (The Norwood), and then at 6 months old he underwent his second surgery (The Glenn).

Ever since Paul got his second surgery we found ourselves in and out of the hospital in Boston — the longest time we had at our home out of the hospital since Paul’s birth had been 3 months. Despite all of Paul’s hospital admissions, he continued to smile and tried to enjoy life as a toddler.

In March of 2022 our lives took another unexpected turn. We were back in Boston for another hospital admittance for Paul and we ultimately found out that Paul would not be a candidate for the third and final HLHS surgery (The Fontan), and that our only option would be to list him for a heart transplant. This news came right before the birth of our baby girl, Sophia, in April of 2022. After Sophia was born, our family was able to get back home to Maryland for a few weeks to enjoy life outside of the hospital as a whole family (including spending time with our Siberian Husky, Princess) before we needed to head back up to Boston for our planned long admittance of Paul waiting inpatient for his donor heart.

Our family waited inpatient at Boston Children’s Hospital from May of 2022 to January of 2023, a total of 8 months.

Unfortunately, as we waited for a donor heart to arrive, Paul’s heart failure progressively got worse. In August of 2022, Paul underwent an additional unexpected open heart surgery to have a VAD (Ventricular Assist Device), specifically a Berlin Heart, placed with the hope of this device allowing Paul to be more stable as he continued to wait for a donor. In early October of 2022, Paul suffered a stroke. He had an incredible recovery from the stroke, and you could hardly tell that there was any damage done. Paul fought so hard for so long, but his donor heart didn’t come in time. On January 7th, 2023, he took his last breaths, at just 2 years and 3 months old. Our family has been absolutely devastated by the loss of our son, and we are still trying to navigate life without Paul. He will forever be remembered for his infectious smile, his bright sparkling brown eyes, his mischievous laugh, his goofy personality, and his long flowing hair. He truly made a lasting impact on everyone he met. We like to think that Paul is riding his bike around Heaven, and waving to all of his friends along the way. His mama, dada, little sister, dog, and extended family and friends miss him terribly. The world seems a little less bright without him in it.

Over the two years that we have been on this journey with Paul, we experienced first hand the stressors of housing and the financial burden it can place on a family. Being a family who received care from a hospital that is out of state and far from our home, we know how extremely difficult it is to find long term housing options that are affordable. It is our hope that through the Paul Magnus Foundation we are able to honor our son Paul’s memory and help families in similar situations by hopefully relieving some of their housing financial burdens.

With Love,
Nick & Steph

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