Sorry for my absence lately. I have a hard time writing updates when we’re in the midst of a crisis. And last week was another one of those nightmare weeks. But right now we’re okay again.
I was becoming increasingly frustrated that Felix wasn’t taking the bottle. We’d been forced to start with the NG tube because his breathing was so bad he could hardly drink without aspirating; but his lungs had since cleared up completely and there was no longer any clinical reason to keep going with the tube. Except for the fact that he couldn’t remember sucking any more. He’d been exclusively tube-fed for over a month and had completely lost interest in oral feeding. Even if he’d wanted to, he no longer had the skills.
I asked for advice from friends, did some research, and concluded that Felix needed to experience hunger to trigger his sucking reflex. So I talked to our team of doctors and they agreed to let us withhold food for a stretch of time to see if that would encourage him to start bottle-feeding again. We were going to stay with him round the clock and try bottling if he ever showed any interest. Ben and I made up beds in his room and got ready for a long night.
He’d gone without food for nine hours and I was trying to get him to take his bedtime bottle when the first seizure hit. His eyes went glassy, his face turned white, and his body went limp in my arms. Ben called for the nurse and she rushed in. Within a few moments Felix revived — his colour came back and he was moving and looking around again.
Unfortunately, another seizure happened a few minutes later. And then again a few minutes after that.
Over the next few hours he had fifteen seizure-like episodes. Even when he revived he wasn’t fully there. His eyes stared out into the night. It was absolutely horrifying to look into my child’s eyes and not see him there.
I lost my mind. I was so afraid that he’d gotten an infection in his brain and this was it. In order to be eligible for gene therapy — his best hope for long-term survival — he needs to remain free of infections. I was convinced that he was either dying or he was losing his one chance at a long life.
Eventually, as one mysterious episode continued to follow the last, I curled up on my bed, covered myself with blankets as nurses and doctors came in and out of the room, and just blacked out for a few hours. I didn’t know if I was going to survive this.
At some point he stopped having seizures and the staff let him (and us) rest.
The whole next day Felix was lethargic and unfocused. He was equipped with an EEG (as seen above) to have his brain patterns tracked, to help us understand what had happened. Our doctors were somber. One of them prayed over him with tears in her eyes. We didn’t know what was going to happen to him.
It took Felix several days to recover from that night. It took me even longer.
The primary doctor in charge of Felix’s care did some intense research and discovered that children with ADA-SCID tend to be prone to seizures when placed under stress. Turns out, starvation is a major stressor. (Again, though, this information was hard to find since the condition is so rare and the survivors so few.)
He had a few more episodes two days later which sent me into another spiral of agony.
But for the last few days, he’s back to his old self.
There is no infection. He’s just as eligible for gene therapy as he was before the seizures. It’s possible that Felix will deal with seizures for the rest of his life, though thankfully there haven’t been any more this week. And though they’re stressful and exhausting, seizures aren’t harmful in and of themselves.
And in fact, things have recently taken a turn for the better: on Thursday night Felix started to suck on his bottle!
We have no idea what changed. For weeks we’d been trying without success. He simply had no response to the bottle in his mouth. And now : boom! Sucking!
It still takes him an hour to get a fraction of what he needs, but the fact that he’s taking in anything at all is so encouraging to me. He might never bottle full-time, but I’m just so happy he’s able to take some pleasure from oral feeding.
So here we are again. Worried, anxious, hopeful.
(PS: He yanked out his feeding tube one morning — hence the reason we usually keep mitts on his hands, as in the photo above — so we had a few hours of a tube-free Felix. Doesn’t he look fabulous? I dream of a day when his face looks like this for good!)