By Ben Gillham, Jackson’s Dad
Life with My Son
On my 33rd birthday, I found out I was having a son exactly 33 years to the day my parents learned they were having a son. I was the happiest person and felt so incredibly lucky every single day until the day he coded. I had so much fun playing with him, taking him on walks, making him laugh, and of course dressing him up as a little blues player for Halloween. I cherished every day and couldn’t wait for him to grow so that I could teach him how to play sports, listen to him, watch him learn new things, share a beer with him and talk about life. Of course all these thoughts are now nothing but a missed memory.
I remember so many minute details about the day we took him into his pediatrician – the day before Thanksgiving 2018. He had a cold for the past few days, but nothing to worry about. On this particular morning, he seemed a bit more fussy and wouldn’t eat his usual amount, so we scheduled an appointment for that day before the doctors were out during the long holiday weekend. Shortly before arriving at the pediatrician, his breathing became heavier. The pediatrician recommended I take him to the ER, which I didn’t think much of since we’d done this before and were sent home the same day 4 months earlier. On my way to the ER, I called my wife to let her know where we were headed. She immediately left work and joined us at the ER.
After spending the night in the ICU, we were recommended that we be transferred to another hospital that would have more extensive support in case he became worse. Naive to why the situation could become worse, we made the choice to go to Children’s Hospital in St. Louis. The next few days were some of the most challenging up to that point in my life to say the least. I was driving home about once a day to pick up a few things, running on 3-4 hours of sleep a night in a half-lit ICU room swapping my wife for the pull-out couch, had numerous tests ran on Jackson (all with results that did not give us any answers) and continuous meetings with doctors, my wife’s phone went completely black so communication with others became harder, and to top it all off a tornado went by just a few miles north of the building on one of the evenings (pretty rare for that time of the year in St. Louis) – what an omen.
As these days progressed, Jackson’s heavy breathing was not subsiding, but we thought we were in the clear two nights in a row when he had about an hour of his old self back – playing and smiling in the bed. Unfortunately, that second night, he was unbelievably restless; he just would not sleep. On my 5th night of 4 or less hours of sleep, I stayed up with him all night, watching Comedians in Cars Getting Coffee to stay awake, while either rocking him in the chair or swaying him back and forth while standing or looking at him every few minutes in the mamaRoo. Lara was able to sneak in just under an hour of rest herself that night, until she woke in the dark hours of the morning to try to soothe him. As she brought him to her chest to feed him, he resisted. After another attempt, we could really tell something was wrong. As I took him into my arms, I could see he was beginning to turn blue. As I said aloud, “He’s turning blue,” the nurse came into the room, hit a button and applied the oxygen mask to his face. As I said a second time, now with more intent, “He’s f***ing turning blue,” a second nurse walked in and immediately hit what I now know to be the Code Blue button, bringing in a flood of doctors and nurses from all over the hospital in what seemed like a minute.
I’ve been in a surprising number of first-aid emergency situations in my life (being a lifeguard in my younger days certainly played a role in that), and perhaps that’s why in the first few minutes of the coding, I was in “first-responder” mode; my instincts just kicked in. I was about to put him on the bed and begin CPR, but first responders also know to move out of the way the second more experienced help is there. So as more personnel poured into the room, I just moved Lara out into the hallway. I wanted everyone who could help my son to be able to do it immediately, and I did not want us in their way. Once in the hallway directly across from our son’s room, I grasped onto the wooden railing. I can still see each grain of this wood as my fists grasped around it so tightly that I could see every vein on the back of my hand. As the seconds passed, and the sound of the heart-rate machine slowed, my first-aid instincts subsided and the weight of the situation grew beyond comprehensible. A doctor from another floor came to our side just to walk us through everything that was going on. While my wife stayed in that spot, I couldn’t take it. I went around the corner and just knelt to the floor, going through spouts of crying and trying to catch my breath. This went on for hours, as I heard the heart rate find a rhythm until it was lost again.
During the first attempt to resuscitate, they found that his airway was blocked. After bringing Jackson back to us twice, the doctors brought Lara and I together in the hallway and asked to put Jackson on ECMO, a procedure that essentially circulates blood to reoxygenate a person while they recover from a traumatic event; we were told that it was risky due to blood clotting and had to sign a paper to acknowledge this risk. We had no other options. We knew he needed significant help.
To our surprise, we were able to join Jackson by his bedside just hours later. When we brought our heads close in to him and touched his arm, he opened one of his eyes and moved one of his legs. We were so happy to see this reaction from him. Unfortunately, it’d be the last time we’d see any signs of life from our sweet, precious baby boy.
During the next few long and agonizing days, we received a roller coaster of updates. At first, he appeared to be doing well enough on ECMO that they were able to conduct a CT on the day of the original event, giving us an answer by the end of the night that he had a left pulmonary artery sling, which wrapped around his trachea, causing it to close to nearly the size of a pinhole; as result, the smallest amount of mucus prevented him from breathing, leading to his coding. In addition, the doctors put a plan together to repair his trachea and re-route his artery after he was more stable from a few days of recovery. Just as we began to see that 4 of the 5 major organs were improving (heart, lungs, kidney and liver), the neurology department informed us that he was showing signs of brain damage from going without oxygen for so long. We felt like we’d just been hit with another ton of bricks, hearing that he’d likely never walk and was likely going to be mostly blind. But within a few hours, Lara and I were already in a state of mind that we’d get past it; we’d sell our two-story house for a one story to accommodate him, and we went down to the hospital library to begin researching how to handle his types of brain injury. Alas, none of this mattered. Just 4 days after his coding, he began showing signs of complete brain failure. His tiny brain took too much damage. We were informed that he’d basically be on machines to keep his body going for as long as he’d live. We knew that this scenario was not the life he intended to live. We made plans to take him off ECMO. We read as many books as we could to him, laid next to him in bed, baptized him, gave him a bath, made artwork with his tiny footprints and told him the story of how his mom and dad met, about his life and how much we loved him. Then we let him go, 6 days after he coded. The baby boy we were ready to shower with Christmas gifts in just 3 weeks was now gone.
Life After the Event
I blame myself for not doing more as his father, a lot. I’m supposed to support my family and above all else, keep my children alive. I should have pushed more about his heavy breathing earlier. I didn’t. I failed.
While these feelings aren’t as consistent as they once were, they’re still there. I miss him more than anything.
After losing Jackson, I lost any interest I had in religion, which I know is very different for everyone, and that’s okay. Regardless, I do believe that a person’s energy continues on. Jackson’s life had so much energy. He brought a smile to everyone and had so much impact on the world during his short life on earth. But just because he may not physically be on earth, I believe his energy is. His energy still exists in me, in my wife, in his grandparents, in my greater family, in all of my friends and coworkers – they all felt the impact of his loss, but they also know his loss can have a greater impact. I’ve put my energy into a lot of things since his loss, including trying to share his smiles everywhere I go. But I particularly hope that this organization can help other parents going through the same hurt to know that their children’s energy still exists. They may have been tiny and may not have been able to be on this earth as long as we all know they should have, but did they ever have a ripple effect that will continue on!
I love you, Jax! Keep smiling my little bud.
– Your Daddy