Thursday, May 18, 2017

Graham's Cranial Journey: the beginning

As many have noticed, Graham has a misshapen head. It was something that was pointed out by multiple people, that I myself noticed early on (around 7 weeks), and something that no doctor agreed was an issue until just barely.

This is my documentation of this frustrating situation, not so much to document but moreso to vent. So if you don't want to read a rage filled post, then stop reading.

Pre-Helmet backstory:
Beginning around 7 weeks I noticed Graham's head was crooked for lack of a better word. For anyone who doesn't know, I work at the Pediatric Genetics Division at the University of Utah. We frequently have children referred to us that have a secondary diagnosis of plagiocephaly or brachiocephaly. I am fairly familiar with recognizing it and didn't feel I was projecting this on my child. However at his 2 month Well Child Check (WCC) our pediatrician at the time waved me off and said it was very mild and it had time to correct. Plus it was too early to treat it even if that was the recommendation. So I was fine with that, until right before his 4 month WCC when I took pictures from above, side view, and frontal and showed them to one of my geneticists who also remarked that it did look abnormal, he was plagiocephalic (he had a distinct bump on one side of his forehead making it look markedly abnormal) and should go see Dr. Siddiqui the regional expert in craniofacial surgery for evaluation.

At our 4 months WCC with a new pediatrician (we switched due to insurance issues) I informed him of my division doctor's recommendations and he said 'if I wanted to pursue that he was fine with that, but it was still early for a helmet'. I decided to go forward with it.

For whatever reason although my appointment was scheduled with Dr. Siddiqui, his fellow instead came in and saw us. He examined Graham and told me that it was mild, that he didn't feel he needed a helmet at this time - it was too early for treatment anyways - but to bring him back in at 9 months (more on this later).

A this point I decided I was projecting my own fears and concerns onto my child inspite of multiple individuals in our neighborhood, family, and even random strangers remarking on his head shape. It's very hard when 100% of the population that you see in a doctor's office is only 1% of the general population to keep your fears in check (this is also why I had genetic testing done while pregnant with Graham to verify common genetic disorders were not present to give me some piece of mind). And of course, I'd been dismissed by two pediatricians at this point, and one fellow specializing in cranial-ortho surgery. Surely I must be seeing an issue that wasn't an issue.

And then due to us strongly disliking the treatment we received at the second pediatricians office I performed a search for a new one. Someone close-by, experienced, and in-network with our insurance. We found a great doctor who we scheduled Graham's 9 month WCC with. Prior to that though he got a terrible sinus infection that hit both Jared and Hilton. So we took him in to be evaluated by this same doctor. Completely unprovoked and without me mentioning it she pointed out his misshapen head. 'Finally! Someone who sees what I'm seeing!' I thought. She said that if it didn't look better by his 9 month WCC that he would need to be evaluated by a specialist. I left it at that thinking 'surely, he won't look that much better in two weeks and that means we should go back'.

I waited for his WCC thinking for sure she would insist on it. Instead, she looked at him at the WCC and said "His ears look proportional position on his head, everything looks symmetrical, I don't think he needs a helmet." That kind of deflated me, but being the mother I am and due to the kind of job I did, I already had made another appointment with Dr. Siddiqui to have him reevaluated prior to even coming to the WCC. Our evaluation with Dr. Siddiqui was the next Tuesday so I decided to keep it and take him back anyways. Mainly for peace of mind, but also to know that I had done everything I could in case Graham ever blamed me for a misshapen head when he was an adult.

We waited an hour to see Dr. Siddiqui, which made my anxiety sitting in the waiting room even worse. We ended up walking the hall for almost thirty minutes and when we finally got into the room the nurse asked me if this was our first evaluation for plagiocephaly and brachiocephaly I looked at her odd and said, "No, we came in back in December when he was four months old and saw Dr. Siddiqui's fellow even though we were on Dr. Siddiqui's schedule." She said that she hadn't seen that note but would look back and find it so Dr. Siddiqui could look it over before coming in. She must not have done this because Dr. Siddiqui came in and when I said we were there for evaluation for a helmet he said, "it's too late, he's too old." To which I of course already frustrated by a long wait and having been told specifically to come back at nine months exclaimed, "What do you mean he's too old?! Your fellow told us to come back when he was nine months!" This kind of took Dr. Siddiqui aback and he asked for clarification of his birthday and then he realized he was only nine months old instead of a year old and clarified the details of us having come in at four months and said, "Sorry, no let's evaluate him. If appropriate a helmet could still be useful." I set Graham on the ground and Dr. Siddiqui took less than 10 seconds looking from the top view of his head and said, "He definitely could benefit from a helmet." And just like that we had a prescription for a orthotic helmet and I was honestly relieved. More on that later.

A couple of days later we were in the Orthotic specialty clinic to be fitted for the helmet. I thought it would be a very fast appointment, however it took almost 2 hours! The scanning of Graham's head itself took less than thirty seconds. The discussion of his measurements however took much MUCH longer. To summarize them he has severe brachiocephaly (96%), and moderate plagiocephaly (7 mm), his right ear is farther forward than his left ear by 4 mm, and his brachiocephaly is so bad his head is wider than it is long. When the tech asked me when I first noticed I told him as early as 7 weeks, and we had asked every pediatrician and even seen Dr. Siddiqui's fellow at 4 months and they all told us to wait. He just shook his head and said, "it's sad how often this happens, your child could have had this corrected by now if he had gotten a helmet as young as 6 months, but now that he's past the major head growth spurt of 3-8 months he will probably have little if any improvement in a short period of time and will have to have the helmet much longer now that he is older." Of course, that's not what you want to hear when you've got your hopes up and finally feel validated that something is wrong. I seriously wanted to smack him because he said that at least 4-5 times that we, 'would see little if any improvement depending on his head growth.' We left with the helmet ordered, expected to arrive in ten days. It will be here next Tuesday and I'm very anxious for it to be on his head so we can get some kind of correction.

The aftermath:
This whole experience has me just tied up in knots, sick to my stomach, and furious as hell at the same time. As someone who works in the healthcare industry I suddenly realized why some mom's are so vocal, because they have to be! Because sometimes no one will listen or agree with their concerns! I was right from the beginning, Graham's head is severely affected according to the numbers with little improvement from his 4 to 9 month pictures (below). And yet I had THREE pediatricians and ONE Cranial-ortho fellow tell me he didn't need it, 'to wait and see' and that 'it would correct itself.' And it wasn't like this was over a short period of time, this was at each of his preventative visits from age 2 months to 9 months and a specialist visit around 4 months. And yet despite my pushing, my constant mention of it I got the brush off by them all about something that is fairly difficult to correct after 9 months, and impossible to correct after 18 months (ish). Something that could have been corrected so much easier and according to the tech with much better results if we had gotten a helmet at a younger age.

Now it's very much a question of 'how long will we have to keep this helmet on to see improvement? Six months? Longer?' When he could have only had to have it for 7-8 weeks, now we get to have it for three times that length of time to hopefully get a moderately normal result. Why did that fellow tell me to bring him back at 9 months?? Why didn't he say bring him back at 6 months when you can still get good results from a helmet?? Why did I doubt my mom instincts and think that I was seeing things that weren't there? Especially when many other people noted on it?

When I said that I was relieved that Graham had finally been given a prescription for a helmet, it was because I felt like I had been the only one concerned about it. Many people have asked me if I'm worried about how other people will react or how it will be having a helmet, the truth is I'm not really worried about those issues  - although it will be difficult having the helmet over the summer due to heat - I'm much more worried that we're getting it too late. I'm worried that I didn't advocate enough for my child. I'm worried that despite all my efforts I still failed to do what is best for my child. Getting that prescription relieved most of those fears except for the, 'it's too late' one. That was only made worse by the tech's comments. I can only pray that we see good improvement, and that we don't have to have the helmet longer than absolutely necessary. And next time, I'll trust my mom instincts.

4 months: see how the back of his head is flat but on an angle?

Side view: look how flat the back of his head is

Look at that bump on the left side of his forehead in this picture 

9 months: still very flat in the back, but more evenly flat, look at the front where the bump was (bottom left of his head in this picture) you can still see the bump - very little improvement!

Side view: see how the crown of his head is so oblong?

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