In the UK there was a recent settlement by the NHS to compensate parents of children who had gone misdiagnosed at birth for hypoglycemia. The article I read referred to the dismissal of symptoms as major medical blunders. I’d say so, seeing as in several cases it resulted in brain damage and even in one case death.
I wonder if we could have ever “sued” for medical malpractice in Kaylee’s case. Looking back on it, it’s pretty obvious to me that something was wrong. Even more insane to me is that they sent Kaylee home from the hospital and she was barely maintaining 40. Sure infants routinely have blood sugar of 40 or so at birth and quickly recover, at least within 24 hours, especially if the mother has Gestational Diabetes. But Kaylee took 3 days on a dextrose drip to maintain and I never had gestational diabetes.
I think what bothers me the most about Kaylee’s birth was the assumptions about me that were made. Because as an obese person I must have had Gestational Diabetes, even if I passed the tests. And you know why I probably passed those tests? Because I have the disorder myself, just didn’t know about it at the time.
I often wonder if a simple blood test, maybe an Insulin level? Urine tests for Ketones? A fasting study after she was off the Dextrose, perhaps, would have prevented five months of living with her disorder without being treated.
Sure we got lucky. She’s normal as far as I can tell. Sure she takes a bit longer to grasp things involving motor skills. She’s smart. I mean really smart. But watching her play sports, and not be able to make her arms and legs do what they’re supposed to do, makes me wonder if it’s part of the damage caused by those five months.
What about them not testing her after she went home? There was no follow up, no one told me what to watch for in regards to signs of hypoglycemia. Hell some of the pictures I have of Kaylee that I thought were really cute actually are pictures of what you would look for a hypoglycemic episode. Anything of her before five months she looks sick. She looks tired.
I don’t like to throw her doctor under the bus. And actually there were two doctors involved at her birth and I’m not sure how much the doctor we see now was involved, except that he was there at discharge to do whatever they do with babies at discharge. The one I blame the most in regards to her misdiagnosis I have avoided as much as possible.
I remember when I was pregnant with Annabelle we went on the hospital tour (since it was new at that time) and I asked if we were stuck with the doctor on call or if we could ask that the pediatrician we wanted could come in. They said we could call in the doctor we wanted. I specifically told the nurses and I believe my OBGYN I didn’t want the doctor that treated Kaylee to deal with Annabelle at all and I only wanted our current doctor.
I often wonder if that info somehow got back to that doctor because of course like I feared he was on call that day when Annabelle was born and I remember telling them to call our current doctor, that I wanted him to check Annabelle and make sure she was alright and not to have the other doctor do anything. It wasn’t possible I guess, who knows why, but our doctor couldn’t come and so I had to deal with the one I didn’t like. And he seemed very aware of my concerns, he had knowledge of Kaylee and what had happened after the fact. And he didn’t accuse me of having Gestational Diabetes again. He did everything I asked, although I wasn’t convinced it was okay because Annabelle was born with a blood sugar of 37. But it rebounded so we went with the infants just have that happen and I chose to not Breastfeed for my own mental health. I didn’t want to risk it. (Which I think the nurses understood too because no one hounded me to do it, unlike when I was in the hospital with Kaylee.)
That being said and even though I still go to our doctor seven years later, I still find myself angry at them in general for missing it. They are the trained professionals. I couldn’t have known anything, they were supposed to know. I understand doctors are supposed to make educated guesses really based on symptoms presented, but sometimes those guesses result in bad things happening.
I hope that every time a child presents like Kaylee did at birth that they think of her and don’t just assume things. I know on Annabelle we didn’t run any blood work but we watched and we made sure she was maintaining. That she was acting typical for a baby. And yes at five months old herself she was too diagnosed with the disorder but she has it like I do, without symptoms (or cured as the UCLA doctor likes to say).
Although I wish cured meant you didn’t have to do anything. See you’re never cured of a genetic disorder. You just maintain it without medication. So she may not need medication but she still needs to be watched and made sure that she eats.
That’s the end of my semi-vent.