Our son, Ephrem Samuel Burrows, was born at home on the morning of October 31, 2008. His name - if you're wondering - is pronounced
Eff-rem. He was greeted with joy and pure love, prayers answered and wishes come true. He died May 22, 2021. He was twelve years old.
Ephrem was lively and curious with a budding sense of humor. He loved trying to make up jokes (and they were really bad). He loved Nerf guns and LEGO bricks. His favorite books were The Last Kids On Earth series, by Max Brallier. We were reading aloud together in Dead End In Norvelt, by Jack Gantos. Ephrem loved it when we got into character while reading aloud snuggled up in our bed. His favorite movie was Twister, and his favorite band was The Steve Miller Band.
Ephrem was filled with love for everyone, and he was well known around our neighborhood for making his rounds and seeing if there was anyone he could help. He wanted a golf cart or a bike trailer to carry his tools and equipment, so he didn't have to walk the whole neighborhood carrying the necessary tools and equipment. He did most of this work for free because he just loved to help people. One time he was offered money and politely refused it, saying, "I just like to help old people." He was kind and wise, and he was generous.
On May 17, 2021 Ephrem became very ill very suddenly, and with no clear indication of what exactly was wrong. We were in 4 hospitals, 2 ambulances, and a helicopter in less than 24 hours. In the end, the root cause of his death was an extremely rare ACTA2 genetic mutation.
Here's the really hard stuff, so if you aren't ready for that, it's time to scroll on by this section.
Ephrem is the only person known to have his specific "misspelling" on the ACTA2 gene, resulting in a series of undetected descending aortic dissections over a period of time. On May 17, 2021 he had a severe dissection following a sneeze. No one knew to look for this, so medical teams frantically chased symptoms during critical hours. He had multiple organ failures, a perforated bowel, compartment syndrome in one of his legs, surgery to remove necrotic tissue from organs and the best attempt to patch up aortic dissections in a young boy with smaller vascular structures than some of the devices are designed for. He was on full life support. His abdomen was left open and sealed over with plastic because the plan included dozens of additional surgeries if he became stable enough to survive them.
Sometime the night of May 21, Ephrem suffered a stroke and pressure in his brain began to crush his brain stem. Repeated scans showed no brain activity. We had to make decisions about the end of our son's life, and we knew his sisters needed to be able to say goodbye. We also got permission for 6 additional family members (this was all during strict COVID procedures) to come and say their goodbyes. The goodbyes took place that night and the next morning. Isabela and Greta were able to join us in some "memory making" projects with social workers and therapists in the hospital.
The removal of life support was scheduled for the 23rd, but late the night of the 22nd the medical team were battling to keep his body going. It was just a matter of time before he would suffer further catastrophic events, potentially violent. All the while praying for a miracle, we chose to end that battle - for everyone's sake. Before any of us had another unthinkable trauma to live with.
Ephrem took his first breath on this earth with just his parents and the gentle, quiet midwives to witness. He exhaled his last with just his heartbroken parents and the quietly weeping medical team.
And when we left that sacred space, the world was still cruelly carrying on. There were people laughing and shoes squeaking on the shiny floors, and someone's stomach growled. And we packed our things. And we called the people. And we made the arrangements. And we continue to survive the unthinkable.
