This post, I want to tackle something different. What happens when your child has more than one condition? If your child has a positional cranial deformity like plagiocephaly, you’ve got a rough road ahead of you. The journey isn’t any easier if more than one condition is in the mix. Although it’s not the case for me, I’ve met many parents whose children are dealing with multiple conditions, and I’ve read the stories of many more.
The preemie population is especially prone to positional cranial deformities, and the number of babies with scaphocephaly in this group is higher than in any other age group. That, combined with the other health problems preemies and ex-preemies have to deal with, makes the need to discuss this topic pressing.
How Life is Different When Positional Plagiocephaly is Accompanied By Something Else…
Two news stories broke recently that pushed me to look at this topic a little more closely. Wesley Cansler of Hazel Park, MI is a delightful little boy, but his short life hasn’t been an easy one so far. He has WAGR, a rare genetic disorder that strikes at random. His health bills are steadily climbing, and his parents are struggling to keep up.
Wesley also wore a cranial helmet for five months to treat his positional plagiocephaly. The costs of helmet therapy and consultations added to an impressive mountain of medical expenses. And Wesley’s parents aren’t alone.
In England, little Oscar Povey of Leek can’t find a daycare that’s willing to accept him. His parents, stretched thin financially by the condition he is dealing with (Charge Syndrome) and the plagiocephaly that has resulted from it, are no strangers to high healthcare costs. The British government offers nursery care for most families with young children, but Oscar is an exception – the government doesn’t have the staff necessary to care for him. They simply aren’t qualified.
My own son was born with torticollis and had heart surgery when he was just 4 days old, so he was recovering from this and spent more time on his back in his early weeks than he likely would have without the surgery. These other conditions can make an already complicated situation even worse.
That left me with questions….I want to know what it’s like to parent a child who has plagiocephaly and brachycephaly and another medical condition along with it. I don’t know your story, and I know that there are parents out there who want to hear it.
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