I’ve just started reading about valproate syndrome, and it’s all very interesting. We’re definitely on the mild end of the physical abnormalities, but I haven’t yet read much about mental abnormalities – the case studies so far have all stopped following after about six months of age. I’ll write more about it when I have my head together more.
One thing sticks out, in screaming red and blue flashing lights. If a woman on valproate is pregnant, then she must be offered testing, and she must be informed what the testing is for. Valproate syndrome can manifest in many different ways, and not all of them are evident on scans, so information is supposed to be given.
My obstetrician saw me after my daughter’s first scans came back abnormal. He said that she might have Down Syndrome, and did we want an amnio. I said yes, I would, and he asked what I would do if it came back positive. I said I would keep the baby, but I would have time to get used to the idea and make plans. His response? Well, if you won’t abort there’s no point in having it. It will endanger the baby and you don’t need it. I was young and scared and agreed with him.
So that was the type of man he was – very high-handed, no respect for the women he cared for. But how did he fail to tell me about the risk of valproate syndrome? I was referred to him specifically because of the medication I was on. It was right in front of him in the referral documentation. Did he just not know the significance of that medication, and not bother to look it up? Or was he withholding the information from me because I didn’t need to know? Either way, he needs firing from a cannon into the sun.
She could have died at birth or within a few days due to metabolic disturbances – her liver or kidneys may not have been up to the task. She could have been, and I believe was, in withdrawal from the drug and have feeding difficulties (although we missed out on seizures). A whole lot could have gone wrong that wouldn’t have been picked up on the fortnightly scans that I was subjected to (with no explanation, just that I was a high risk pregnancy and so I needed more scans).
If she had not survived, or if she had been seriously unwell, I would like to say that I would have held him to account. But the truth is, I was very young, and pretty scared of such a high-ranking man with so much experience, and I believe that I was really getting the best care.
It has taken seven years to get a diagnosis for her difficulties. So many hurdles that we’ve had to overcome, and so much could have been avoided with good prenatal information and diagnosis at birth. But my obstetrician was either incompetent or too arrogant to give me proper care.