Our last month with Brandon
As I started to begin the preparations for the upcoming Thanksgiving holiday, and the excitement that comes with it when your extended family says they’re going to fly across the country to see you and “your special addition” to the family, you become very excited. I started buying Brandon some adorable outfits to wear, including the cutest booties with turkeys on them for Thanksgiving Day! During our shopping spree, I had no idea that Brandon would never get to wear the newly purchased outfits and the booties would be worn while he lay fighting for his life in the hospital PICU (Pediatric Intensive Care Unit).
His final weeks here on earth have been permanently etched in my mind. The first symptom that something was off with Brandon started just six days before Thanksgiving. Brandon had a patchy rash on his face, and he wasn’t interested in taking his bottle or eating his fruit and cereal. Instead, his normally active legs had become very limp, and he appeared to have no strength. All he wanted to do was sleep or be held, which wasn’t normal for him. Grandma J was watching him that day while I was working. I still remember her calling me at work to say I needed to call the pediatrician immediately, something didn’t seem right with our normally energetic infant. We scheduled an appointment and took him in that evening to be seen. While he was being examined by the doctor, Brandon briefly smiled at his dad. The doctor said, “Babies that are really sick won’t smile. I think the rash on his face is an allergy to something, maybe Heather’s perfume, and I’m convinced he has a virus and there’s nothing I can prescribe to help him, it just needs to run its course.” Being first-time parents, we didn’t want to push but we both left there feeling like our concerns for our baby hadn’t been heard.
He took very little formula over the weekend and Brandon struggled to stay awake. This continued into Monday, and it was obvious to all of us who knew him that he had come down with something. We took him back to the doctor’s office and this time I made sure our concerns were heard. We insisted he be sent to the hospital for bloodwork and testing. Once at the hospital they took one look at him and knew something was horribly wrong and he needed oxygen immediately; his fingernails were blue, his lips were blue and it was noticeable he was struggling to breathe.
Next, the gamut of testing began as we searched for the cause of Brandon’s sudden decline in health. RSV was suspected but multiple times the test came back negative. Over the next three weeks, Brandon’s health continued to rapidly decline and it was beyond our comprehension how quickly our lives were being changed. While he was being transferred from hospital to hospital, each time the treatment got more aggressive and extensive, as the doctors fought for a diagnosis and reason for his “failure to thrive.” I’ve never felt so helpless in my life! At this point, I began to get a sense that Brandon might not return to us. PCP (Pneumocystis pneumonia), also known as PJP (Pneumocystis jirovecii pneumonia) was the only test that was coming back positive. This type of pneumonia is primarily seen in patients with HIV/AIDS, which Brandon tested negative for. PJP can cause severe lung infections in people with weakened immune systems, and in Brandon’s case, should have pointed the doctors in the direction of SCID. Back in 1993, we were told the incidence of SCID was one in a million. It was considered a rare disease and I’m sure the doctors treating him had only read a paragraph or two about SCID in the medical textbooks and never imagined they’d ever treat an actual patient. Today, the actual incidence of SCID has been shown to be much more common, though still classified as a rare disease, there are approximately 100 babies born with SCID in the U.S. each year.
Running out of options the team decided to take a skin biopsy from Brandon, which was tricky to do because of the risk of bleeding while on ECMO (a heart/lung bypass machine) but it turned out to be the most informative test thus far. When the results of the skin biopsy came back, this is when we heard the words Severe Combined Immune Deficiency or SCID for the first time. The prognosis was not good. Back then the only treatment for SCID was a bone marrow transplant and it was a risky procedure. During Brandon’s three-week hospitalizations, he had developed Graft vs Host Disease (GvHD) from the 13 unirradiated blood transfusions he had received. GvHD alone is life-threatening and extremely risky but on top of that, he had suffered at least one stroke while being on ECMO and some of his organs were starting to fail. Thankfully, the doctors took the unimaginable decision out of our hands and instead told us, “There is nothing else we can do for him.” At this point, we brought all our family members in to see Brandon one last time and tried to prepare ourselves to say our final goodbyes.