7/23/11
I have been thinking lately about how different I want Oliver’s first year of life to have been, and how much I wish I could change about how Jadey and I handled everything. Jadey and I are constantly hearing kind people tell us how great we are at being on top of Oliver’s medical needs and getting help quickly when he needs it. The truth of the matter is, though, that we should have been better. There are so many things that we should have done differently and more quickly.
Oliver started having infantile spasms (IS) sometime within the first 4 months of his life. He was developing normally until around 4 months of age, so I tend to think that was when the spasms started. Jadey thinks the spasms may have started much earlier though, even within a few days after his birth. Oliver was in the NICU for 8 days due to jaundice, and we noticed what looked like startle reflexes happening for no apparent reason when he was lying on the bed under the lights. The nurses told us that he was having the startle reflex since he wasn’t swaddled, but Jadey thinks those movements may have been the start of Oliver’s IS. Around 4 months of age, Jadey saw Oliver’s startle-reflex-looking IS and said we should go to the ER. I said it was just a startle reflex and that it was fine. At the 4-month appointment, I asked Oliver’s pediatrician about the strange startle reflexes, including telling him that they weren’t going away and were actually happening more. I told him that the startles didn’t look normal: that they didn’t happen when he was surprised and that a bunch would happen in a cluster. Oliver would be lying comfortably in his crib or in my arms, and he would have a group of these so-called startle reflexes, one after another. The doctor said it was still normal for Oliver to be having the startle reflex until he was about 6 months of age, and he didn’t seem to mind that the movements were different from a normal startle. We were in to the office a lot during that next 2 months. Oliver was having a really hard time and crying pretty much constantly, unless he was eating or sleeping. He was losing skills, which was a lot easier to see in retrospect than it was in the moment. Loss of developmental skills is much more elusive to track than you would think; at least it was in Oliver’s case. It wasn’t like one day he was smiling and playing, and the next day he stopped smiling and spent all his time staring off into space. His crying gradually increased more and more over a few weeks, and his happy smiles gradually decreased over weeks to months. When all you want in the world is for your baby to be normal, you find valid ways to explain things like this that make perfect sense. He’s crying all the time because he is teething. He spits up all the time, so he must have reflux- don’t you know how miserable and painful that is? Of course he doesn’t want to smile if he is in so much pain. And then every now and then, like once a week or so, he would have moments of clarity where we would hear a perfect “ba” sound, or he would see me, and a great big smile would light up his face. We saw that, breathed a sigh of relief, and used those as evidence that he wasn’t truly losing skills. Not to say we weren’t worried. Any time we saw a baby around Oliver’s age, or even younger, they were doing WAY more than he was. Seeing babies that could babble, were interested in what was happening around them, and were developing lots of new skills, I would literally feel sick to my stomach. I was bringing Oliver in to the pediatrician around once per week at that time. One visit in particular I remember pretty clearly. Oliver was around 6 months of age, and Jadey and I were scared out of our minds. We were pretty sure most of the time that he was truly losing skills, and his skill loss wasn’t due to physical pain. I took Oliver in to the pediatrician with the express purpose of getting a referral to a neurologist. The doctor listened to me, sat down with me, and convinced me that everything was ok. In retrospect, I could tell that he didn’t really believe me about Oliver’s loss of developmental milestones. He just thought I was a paranoid mother whose mind inadvertently invented the worst possible scenario, just because it was the exact thing I DIDN’T want. He gave me lots of empty reassurances and actually gave me wrong information about the startle reflex and about how seizures present. From my time spent reading posts on TS discussion boards, I know that we are FAR from being the only family with a rocky road that led to their diagnosis of TS. I’d say the family that finds out while still pregnant or right after birth, before the seizures even start, is the anomaly; the majority of us have angry, frustrating stories about incompetent doctors and misinformation that was given. Jadey was the one who found out about IS while searching on the internet, and after reading a short description, we knew beyond a shadow of a doubt that THAT was what Ollie was having. That discovery kick-started the frenzy of doctor visits, pushy emails, and desperate phone calls that has become our current life.
As you can see, it’s not like we did nothing about our concerns. However, all these excuses about our visits to our horrible, good-for-nothing pediatrician don’t make up for the fact that we didn’t catch Oliver’s IS until 3 ½ months had passed, which is much later than the average case of IS is caught. We should have caught it and stopped it sooner. If we had, Oliver would be doing so much better than he is now. I wish that when Jadey said we should take him to the ER, I would have said, “Okay, let’s go.” Although knowing what I now know about doctors and nurses in the ER, I’m not sure that would have done much good either.
Every part of my being knows that it is unhealthy for me to dwell on the “what-ifs”, but part of me just can’t help it. What if my OB had noticed Ollie’s large cardiac rhabdomyomas or any of his brain tubers during one of our ultrasounds? What if we had looked more into the faint heart murmur that Oliver’s pediatrician mentioned on one of his visits in the NICU? What if Jadey had done his Google search a couple of months earlier? What if we had just made an appointment with a neurologist instead of trying to get a referral from our loser pediatrician? Whatever the answers may be, I continue to avoid blaming myself. Of course, I don’t blame Jadey either. I will also refuse to blame Oliver’s doctor since my bitterness toward him will only hurt me.
Here’s the place at the end of my post for a nice little wrap-up statement to show that I’m moving forward toward the journey of acceptance. Something like, “it’s all in the past now,” or, “at least I can learn from my mistakes and do better next time,” or, “whatever doesn’t break you makes you stronger.” None of those really fit my reality though, so I’m just going to say this: I wish we had been better.
