Memphis was born prematurely at 31 weeks. Just prior to his birth, doctors diagnosed him as Intrauterine Growth Restricted (IUGR). He arrived weighing only 2 lbs. 10 oz. Other than measuring small (legs and arms specifically), the pregnancy was uneventful until pre-eclampsia crept in and forced us to deliver via c-section. Memphis came out with a strong cry and good APGARs, which were reassuring. Because of his size and still-developing lungs, he was intubated and would spend almost 2 months in our community hospital Neonatal Intensive Care Unit (NICU) with many failed attempts at extubation. We requested a transfer for progressive care at a higher level facility, where we thought we would be going for a trach and G-tube consult. Within 24 hours of arrival, we received news that he had a large VSD – hole between the bottom 2 chambers of his heart – a small ASD – hole between top 2 chambers of his heart – and an open PDA (typically closes itself after birth). The PDA and VSD were the most concerning since they contributed to increased blood flow to his lungs. Although they were able to close his PDA with medication, at 2 ½ months old, he underwent open heart surgery to patch his VSD. A few weeks passed without success in weaning his support on the ventilator, so just shy of 4 months old, he was once again wheeled away to the OR for a tracheotomy.

In another unfortunate turn of events, Memphis developed small masses on his liver around 9 months old. We would continue to monitor these in the coming months. Meanwhile, he had been receiving a (sometimes moderate, often mild) constant drip of paralytic, or intermittent dose as needed, for several months off and on (more often than not). We were beginning to see better compliance from his lungs on his new method of breathing support (the result of a lot of research on our behalf and a second opinion) and were making strides with very slow weans and a plan of action that included doing everything at his pace. Although the paralytic weans had also been happening slowly, we wanted to make it to his 1st birthday before removing it altogether. A couple of days after his birthday, he was in a stable enough position to get a CT scan, which was also a goal for a while.

That CT scan would unveil that his lungs were far too calcified to ever sustain life without mechanical aid, and that it was highly probable the masses on his liver were cancer (Hepatoblastoma to be precise). There was no question where the road was now leading us, so we decided to allow friends and family to visit over the next few days. At 371 days old, we removed him from life support. He continues to touch many lives through our advocacy and sharing his story. His life certainly had a purpose, as does his legacy.