Zika scare: A message from a mother of two girls with microcephaly
It is not a ‘terrible’ birth defect.
That is the message Kansas mum Gwen Hartley wants new mothers whose babies have been diagnosed with microcephaly to know, so they feel less alone and less afraid.
Few people had heard of microcephaly, a birth defect that causes abnormal smallness of the head, until recently.
An alarming rise in the number of babies being diagnosed with the condition has been linked to the Zika virus, which the World Health Organisation has declared an international health emergency.
But to some who have been living with the reality of microcephaly for years, the recent attention to the condition has been hurtful.
Ms Hartley, whose two young girls were born with microcephaly, wants others now facing similar futures for their children to know the great joy her daughters have brought to their lives.
"I don't look at them as having terrible birth defects. I look at them as gorgeous. To me that is not a horrible, hideous birth defect. It's no less beautiful to me," she told the Washington Post.
Gwen and her husband Scott had been given no indication that there were any complications before the birth of her second child, Claire, who is now 14.
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While doctors quickly realised after her birth that there was a problem, it was months before Claire was diagnosed with a serious form of microcephaly.
It is not known how she developed the condition - the couple already had a healthy son, Cal.
Doctors did not believe Claire would live beyond a year, but five years later, with the young girl doing really well, Gwen fell pregnant again.
This time, doctors established that the baby had microcephaly during the pregnancy at her 26-week scan.
Lola, now nine years old, was born with the same condition as her sister. They also have dwarfism, cerebral palsy and a number of other problems affecting their bones and joints.
Gwen keeps an account of her family’s daily life in her blog called The Hartley Hooligans.
In one account she wrote: “We feel the pity and the judgment, we hear the comments, questions and remarks, and we see the stares, elbow nudging, and sheer surprise - and none of this matters to us, because WE LOVE OUR LIFE.
"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. We only wish everyone could feel what *WE* feel on a daily basis.
She also writes heartbreakingly about the struggles: “seeing seizures, reflux, sleep issues, tone issues, brain issues, dislocations, etc. on a daily basis around here is common”.
But throughout the blog her primary emphasis is that the one per cent negativity is normally outweighed by 99 per cent joy.
Greater attention has been paid to microcephaly as fears around the Zika virus have grown. In Australia and beyond, many people are trying to understand what the virus is, how it has spread, and how it can be stopped.
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