Ok, let me start this off by saying that there are exceptions to every rule and situation. I write about my experiences, and those that I observe, but I have no way of knowing everyone’s individual experiences. I do however think that for most of parents of kids with special needs, you will be able to relate. There is not a day or week that goes by that I don’t hear of a struggle that a parent is having with a doctor in trying to get a referral, or treatment, or test, or getting them to listen to them about their child.
I have a general distrust for the medical community. I am tired of placing trust and faith in the hands of someone with a white coat and a name tag with “Dr.” Like I said, there are exceptions. I love our family doctor, and I love our pediatrician, but given the sheer number of physicians that we have encountered in 5+ years, we are working on about a 1% success rate.
In our situation it is hard not to be leery of what a doctor says to be true. We had expert neonatologists, flanked by nurse practitioners, and residents who ignored the clinical presentation of jaundice in my son, and to put it bluntly, caused his brain damage. I do however owe his life to an amazing quick thinking OBGYN, so I do give credit where it is due. The reality though is that we have had way more negative experiences than positive, and at times it has been almost too much to handle.
I also know that our experiences pale in comparison to the challenges that other parents have had in getting doctors to listen to them, or have told them worse things about their child’s future. I know a family that was told to consider taking their son off life support in the NICU. They didn’t, and now he is in SK, walks, talks, rides a bike, normal cognition.
Here is a quick list of what we have been told by “experts” over the last 5 years.
-He will never be verbal.
-He doesn’t have Kernicterus, he never had severe jaundice ( Guess again)
-He suffered brain damage from the effects of Twin to Twin Transfusion ( NOPE)
-You can do therapies, but he won’t benefit greatly from them
-He will never benefit from cochlear implants.
-We don’t think he can swallow. ( Have you seen my kid eat, you need to keep your fingers away from his face or you will lose them)
-He aspirates ( NOPE)
-He doesn’t have pneumonia because he doesn’t have a fever (Happened for every one of his hospitalizations when I insisted them admit him, and then VOILA, the xray confirms serious pneumonia in his lungs)
This doesn’t list all of the future predictions about this physical abilities, but that would be a WAY longer list.
I love when I have ER doctors tell me there is no way he could have Kernicterus. “Have you ever seen a kid with Kernicterus Dr. Knowitall?” ” Well, no I haven’t because kids don’t get Kernicterus anymore.” REALLY? Get your head out of your ass, and you will see one sitting in front of you. He is sitting in a wheelchair because of the athetoid CP, and wearing cochlear implants because of the Auditory Neuropathy. Take a look at his teeth and you will see the dental issues, and here, look at his MRI, which shows damage to his basal ganglia, consistent with Kernicterus. What do you say now smart guy? Oh, and you are an ER doc, not a neurologist or even a pediatrician. Go sew up someone’s cut finger, or put on a cast on a kid or something, and get me someone who can help, and stop arguing with me before I slap you, and get hauled out of here by security.
It is this type of ignorance that has caused a re-emergence of jaundice and subsequent cases of Kernicterus.
“Maclain will never be verbal” which translates to “We will concede, and give him a cochlear implant to basically shut you up Mrs. Agnew, but do not expect much”. Oh, ok, Dr.Bigshot. Come on over to my place and you can listen to Maclain ask for his favourite food, movie, book, and he will tell you all the colours of the rainbow, count to 40, say please and thank you, and then ask you to give him a bath and take him for a walk. Maybe I will tell him to tell you where to go next time he sees you. How is that for not being verbal? And for your information Dr. Bigshot, we didn’t want the implant so he would be verbal, but so that he could HEAR! But you go ahead and give all those implants out to the perfect candidates who only present with a profound hearing loss caused by genetic factors, or use of antibiotics. Don’t worry about our kids with multiple challenges, who could benefit from this technology to improve their lives in an area where you could really make a difference. Why “waste” such expensive equipment on a kid in a wheelchair with limited mobility, and poor head control. And make sure you forget all the success stories of kids like Maclain who have done amazingly well, so that when the next child with physical or cognitive disabilities comes along, you will make their fight just as hard.
“Why would we give him a neuro follow up and schedule an MRI? Even if it shows something, it won’t change anything’. UM. HUH? If a kid has a suspected broken leg, they do an x-ray. If they have poop issues, they see a GI and get a scope. If they have an issue with their kidney they get an endocrinologist, and have some testing done. But if he has a BROKEN BRAIN, you don’t think he needs to see a BRAIN specialist, and maybe get an xray of his BRAIN? And if the damage is done, and can’t be changed, you can still give parents an answer, and something we like to call closure. And in our case, it showed that Maclain’s brain damage was caused by something that could have been prevented, giving us an opportunity to investigate further. I would say that is kind of a big deal. As they used to say in the Bionic Man ” We have the technology” ( Sorry, I am dating myself there)
If I could sit all the doctors down and have at them, this is what I would say.
“Here is the thing. YOU DON’T KNOW EVERYTHING. I am his MOTHER. I birthed him. I know him better than you ever will. I KNOW more about his condition than you do because it is ALL I read about, think about and research. I am not oblivious to his limitations, and I am not unrealistic about my goals for him. I am not making stuff up. If I could meet you in a dark alley, I would let my inner ninja go crazy on you. I have every right to question you, and I have every right to ask you to do more. Please let your ego go, and maybe you will learn something. This is my child. He means something. You took an oath, so why don’t you try to live up to it. I am not saying that being a physician is easy, but you chose to be in this field. I like to think it wasn’t only for fortune and fame. I want you to listen, and try to help. Don’t be condescending and rude, and don’t make me feel stupid. Be honest without being mean, and don’t comment on things you know nothing about. Surprise, you are not perfect. None of us are. Despite lots of fancy degrees on the wall, and letters behind our names, we all make mistakes. But don’t make a mistake with my child because you were being ignorant and cocky. And LEARN from my child, so you remember, and then when the next child comes along you won’t make things as hard on the next family. And every child is different. DIFFERENT. And special. Very special. Be honoured that you have a chance to help a child who needs it.
“We worry about what a child will become tomorrow, yet we forget that he is someone today.”
— Stacia Tauscher