“What Are the Odds?” -Laura

Sawyer in hospital bed

GAMT is really, really, rare. We all know that! I am sure quite a few of us have been told to buy a lottery ticket a time or two. We have! With the chances and diagnosed cases and all, but can lightning strike twice? We may be going for the lotto next!
After finding out about Levi’s diagnosis with GAMT, and the journey we travelled to get that far, it really made me question if we wanted more kids. I always wanted more than just an “only child” but after the emotional & physical roller coaster we endured I just didn’t know if we could handle having any more, and the chance of another GAMT diagnosis that came with it. Parenting is hard enough – I just didn’t know what we could handle. But as time went on, we thought hey you know, we are handling this, and if we have another GAMT baby then Levi would have a friend to get medicine with…we could do it.
Although we prepared ourselves with the either way outcome with the arrival of Sawyer, relief was felt when we were told he did not have the GAMT deficiency, he is only a carrier of the gene. Phew… It was fun watching our child develop normally. It was a new experience, watching milestones be met, but right as he turned 6 months old I had that gut wrenching feeling, the same one I had with Levi, that something was wrong. If it wasn’t GAMT, and something we were familiar with, what were we in for now?
I took Sawyer to his pediatrician (the same one that helped get the ball rolling for a diagnosis for Levi) with a Sawyer wearing Baby Big Deal shirtlaundry list of problems he was having, but none of them seemed to correlate with each other. For example, he was constipated and I was worried about that, but his cry was weak and he had stopped smiling. So instead of sounding like a crazy, I focused on the most concerning issue. She helped him with the constipation, and all was well…so we hoped. The next day I was knocking down their door because he was not eating and would choke when he tried to eat. He literally was dying in my arms as I begged for the front desk to let him see a doctor. I was told his normal doctor had an extremely full schedule and was behind, so she just couldn’t see him. I knew once we got in she would eventually see him, because he was in such bad shape. Once they weighed him and compared how much of his body weight he had lost since the day before, our doctor rushed in the room and got us admitted to the hospital immediately for severe dehydration. My poor baby got 7 bags of fluid over the next 24 hours. It was bad. All sorts of tests were run and all came back normal. UGH…I knew something was wrong, but what?? We were discharged because he was then hydrated and looked good again. Through the night I just couldn’t stomach it any more. I recorded his WEAK cry and just rocked him, again, pleading now that my second child would make it through the night so we could return to a doctor or hospital again the next day. When I was at the Dr. for the third day in a row, I just begged her to help us, because I felt the exact same way as I did with Levi, and I just needed help. She agreed to get us to Primary Children’s. As we were waiting for the hospital to approve us for getting admitted, she looked him over again, came in and out, just brainstorming and baffled; but she eventually came in to the room and asked if we were doing any construction in our home or if we lived by a construction site. We were remodeling our basement, but why would that matter?! I told her and she said, “I think he could have infant botulism, but I’m not sure.” She was in the process of getting things ready for us to go to the hospital and when I had a free minute I googled it. My heart just sank. EVERY. SINGLE. SYMPTOM. I KNEW this was it. We raced him to the hospital and told the doctors what his pediatrician thought. They looked him over and agreed, it was Infant Botulism. They would fly the $50,000 miracle drug “babyBIG” from California ASAP and start the healing process. We were then told to plan on a month stay in the hospital. WHAT?! I had just left my 4 year old with his grandparents for a night, not a month.
Sawyer and Levi reading booksI’ve pondered a lot about which one I would prefer again…the insanely long diagnosis stage, or the crazy hospital stay with another cute one at home (who couldn’t visit because it was RSV season). They’re both bad. I wouldn’t wish this to happen to anyone, but this is our story. Sawyer was able to recover fully just over 2 weeks in the hospital and then a week or two at home to get his strength back. He is now a chatty, busy, funny 2 year old who loves anything to do with playing ball, being at the park, and he adores his older brother.
According to a google search, there are less than 100 cases of infant botulism a year. Pair that with the chances of GAMT, and you can see why we are heading for the lottery. Hey, I hear it’s pretty high right now $$!

Just a side note – Infant Botulism comes from a spore that is breathed in, or from giving honey to a baby before they are one. Trevor and I both thought of botulism as coming from bulging cans of tuna…not the case!

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