As the U.S. and the world become more aware of the Zika Virus and its possible effects on the fetuses of pregnant women, attention has been given to a family here in the heart of Kansas. Though a definite link between the virus and a serious birth defect called microcephaly has not yet been proven, an astounding rise in the number of children born with microcephaly in countries where the Zika virus is a problem, especially Brazil, is leading the medical community to consider that possibility.
What is the Zika virus? The Zika virus is an infection transmitted by infected Aedes species mosquitoes. These are the same mosquitoes associated with the spread of dengue, yellow fever and West Nile virus. Until recently the Zika virus had not been seen in the Western Hemisphere, so people in this part of the world have not built up immune defenses against it. The New York Times published an informative article that answers the most common questions about the Zika Virus: http://www.nytimes.com/interactive/2016/health/what-is-zika-virus.html. For information on the symptoms, diagnosis and treatment of the Zika virus, visit this CDC (Center for Disease Control) site: http://www.cdc.gov/zika/symptoms/index.html.
What is microcephaly? Microcephaly is a rare neurological condition where a child’s brain and head do not develop normally during pregnancy, resulting in a head size much smaller than expected. Children born with microcephaly may have a range of associated challenges including feeding difficulty, seizures, intellectual and developmental disabilities, hearing loss and vision problems. Each case is different, ranging from mild to severe symptoms.
For more information on microcephaly, the Mayo Clinic has published this information: http://www.mayoclinic.org/diseases-conditions/microcephaly/basics/definition/con-20034823.
What does a family from Kansas have to do with all of this? Nothing and everything. The Hartleys, a family of five (or seven if you count the dogs) living in Benton, KS, have two daughters with microcephaly. Microcephaly is the only connection. The girls are almost 15- and 10-years-old and their microcephaly is not believed to have been the result of a Zika virus infection. But since microcephaly had been so rare until now and the Hartley’s have 15 years of experience dealing with the condition, the Hartley’s have graciously agreed to share their story. And they have been asked over and over… NBC, the BBC (British Broadcasting Corporation), Fox News, Redbook Magazine, the Huffington Post, and the Chicago Tribune are just a few of the media outlets to run stories about the Hartleys.
No single story or article can capture the Hartley story the way Gwen Hartley and her family have on their Facebook page https://www.facebook.com/TheHartleyHooligans/posts/676882692415266 and on Gwen’s blog: http://www.thehartleyhooligans.com/. We’ll simply give you an introduction, knowing that you’ll be as captivated by the Hartleys as everyone else has been.
Gwen and Scott Hartley’s son Cal was 2 years 7 months when Gwen gave birth to Claire, a 6.5 pound, full-term baby girl whose head looked a bit small. Nothing could have prepared them for what followed. After many tests and misdiagnoses, Claire was finally diagnosed with Microcephaly with Simplified Gyral Patterns. In addition, the doctors said she had spastic quadriplegia cerebral palsy, epilepsy, and Cortical Visual Impairment. The Hartleys were told Claire would likely not live to see her first birthday.
The fact that Claire will turn 15 this summer is a testament to the Hartley family. When the doctors wanted to fill Claire with medicines, Gwen could see that her tiny, sensitive body couldn’t even handle Tylenol or Benedryl. With natural medicine, Claire made it to her first birthday and beyond. Her life was far from normal, but the Hartleys had beat the odds.
Claire was four years old when Gwen and Scott decided to have another baby. Since Cal was normal and the genetic testing they’d done did not reveal a gene responsible for Claire’s microcephaly, the Hartleys believed they could have another typical child.
With serial sonograms being done throughout the pregnancy, everything seemed fine. Then at 22 weeks, there appeared to be a problem with the size of the baby’s head. At 26 weeks, microcephaly was confirmed. Lola was born a month early and was taken home to the loving family Cal and Claire both knew.
Life in the Hartley household is never dull. Their schedules with feeding alone (every 2-3 hours) would be challenge enough for most of us. But add schedules for chiropractic care, craniosacral therapy, hydrotherapy, hippotherapy, physical therapy, occupational therapy, speech/technology therapy, vision therapy and a teacher. It’s nothing short of amazing that they can even function. And yet they have taken the time to share their story in case it could help other families deal with a diagnosis of microcephaly.
The Hartley family doesn’t simply function, they thrive. They do it with unconditional love, humor, humility and an enormous amount of GRACE.
Take the time to learn about the Hartley family and your heart is sure to be touched.
The Hartley Hooligans Facebook Page:
Gwen Hartley’s Blog:
Fox News Story:
Chicago Tribune Story:
Huffington Post Story: