October 2, 2016

 

MicrocephalyBy this time, you’ve no doubt heard about Zika. As the number of cases around the world has increased, so has media coverage. Much of the fear surrounding Zika has been due to a birth defect it is believed to cause: microcephaly.

Microcephaly is a relatively rare condition that affects an estimated 2 to 12 of every 10,000 babies born in the United States.  As many people now know, one of the hallmarks of microcephaly is an abnormally small head. The condition can also cause both physical and intellectual delays in development. However, this diagnosis does not define the child or his or her family. Here are a few things parents of children with microcephaly wish everyone knew: `

They Love Their Children

This should go without saying. A parent loves their child with microcephaly the same way any parent loves their child. The love is complete, not lacking. Perhaps Gwen Hartley, mother of two children with microcephaly and one without, said it best when she wrote, “We love our three children, feel blessed by each unique child, and wouldn’t change one thing about our life or what we’ve been through.”

They Don’t Need Pity

In February 2016, The New York Times began an article by saying, “A baby with a shrunken, misshapen head is surely a heartbreaking sight.”  While the intention is well-meaning, sentiments like that aren’t always welcome by parents of children with microcephaly.

Children with microcephaly are not burdens or undesired. They are loved and wanted. They help make a family complete.

Elizabeth Picciuto, who has a son with microcephaly named Edmund, responded to this sentiment in a piece for The Daily Beast.  In the honest and eye-opening blog, she wrote, “Edmund may be many things, but here’s what he isn’t: a heartbreaking sight.”

Each Child is Unique

Some children with microcephaly develop without delays. Others have a more severe case of microcephaly, which may cause seizures, hearing loss, problems with speech, or other developmental hurdles. Like many conditions, microcephaly exists on a spectrum. Furthermore, some cases may be caused by Zika while other may be caused by genetics.

Outside of the condition, each child is more unique still. They have their own personalities, likes, dislikes, and dreams. Like their neurotypical counterparts, children with microcephaly just want to be treated with kindness, respect, and dignity.

Whether you’re commenting online or talking to someone in person, keep these thoughts in mind when discussing microcephaly. Remember these poignant words from Hartley about her life as a mom of children with microcephaly, “I wouldn’t have chosen it, but I love it.”

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