Monkey's Mild Metopic Story (CCMC)
Monkey was a relatively healthy, happy baby. He did have reflux, but we controlled that with medication eventually. At his 9 month well check we asked his pediatrician about his eyes appearing to be a bit crossed sometimes. She chalked it up to an epicanthic fold and said it would go away as he got older. It was at his 12 month well check that the pediatrician told us she was concerned about his head shape, that something, "didn't look quite right." She referred us to a pediatric neurosurgeon and craniofacial surgeon.
The craniofacial surgeon said we basically had nothing to worry about. Monkey did have metopic craniosynostosis, but it was mild enough that surgery wasn't warranted. We could have the ridge shaved down when he was school-age, since "kids can be cruel to someone who looks different and Monkey might get picked on." But he didn't want to do anything for Monkey before then. We saw his colleague, the neurosurgeon, a few weeks later and he was dumbfounded that the cfs absolutely would not consider surgery. He thought Moneky should have the surgery without a doubt, and suggested we go back to the cfs to talk about it more.
Well, I wasn't about to do anything of the sort. If these guys couldn't even come close to agreeing then I wasn't going to leave Monkey's health in their hands. On to find another specialist...
It was after that appointment that I happened to stumble on to a little website called craniokids.org and I can tell you that was the answer to our cranio prayers! I got invaluable recommendations and feedback right away from other moms in Connecticut who knew exactly who Monkey should see next. When Monkey was 14 months old we brought him to Connecticut Children's Medical Center.
The team there (Drs. Martin and Castiglione) were fabulous right from the start. The only problem was that they recommended we put Monkey in the wait-and-see category. Great, a third different opinion! I decided this would be a good time to email Drs. Fearon and Staffenberg. Staffenberg was reluctant to give an opinion on a mild metopic like Monkey without seeing him in person, but Fearon suggested that if Monkey were his son he would probably want him to have the surgery.
So if you're keeping score:
Opinion 1: No surgery
Opinion 2: Surgery
Opinion 3: Wait-and-see
Opinion 4: Undecided
Opinion 5: Surgery
Two more months passed and my husband and I finally came to the realization that we were going to have to be the ones to decide what was in Monkey's best interest and then tell his team what we wanted to see happen. After comparing the pictures of Monkey that we had been taking monthly since his diagnosis and getting some more great feedback and support from our family and the great moms and dads here on craniokids.org, we finally decided that Monkey should have the surgery. Luckily for us, at his next followup appointment his team agreed and surgery was scheduled!
Monkey was 12 months old at the time of his diagnosis and 20 months old when he finally had the surgery. I'm not going to sugar coat it, the surgery wasn't a walk in the park. The hospital staff had trouble managing Monkey's pain after his surgery, and because he sleeps on his stomach Monkey's eyes were swollen shut longer than most kids' are. But we made it through and we have no regrets whatsoever.
I really think that my husband and I knew all along that we thought Monkey should have the surgery. We just had to listen to our instincts, and trust ourselves enough to make this enormous decision.
One Month Post-Op
Two Months Post-Op
Four Months Post-Op
Thanks for sharing your story....I'm sure it'll help a lot of families who are struggling. Monkey looks great.
Originally Posted by Janet
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