‘We feel the pity’: mother of two kids with microcephaly talks joy and struggle
Gwen Hartley feels pitied when out and about with Claire and Lola, both born with unusually small heads but she wouldnt change a thing. The family hopes headlines about the Zika virus serve to raise awareness
Gwen Hartley recalls the sense of wonder she felt when she gave birth to Claire, her second child. You forget how tiny their little heads are! was the first thing she said in the delivery room when Claire came into the world.
She was full term, her weight was normal and her Apgar scores assessments taken moments after birth were excellent. But doctors quickly realised there was a serious problem.
After months of searching for answers, Hartley and her husband, Scott, finally received a devastating diagnosis: Claire had a serious form of microcephaly, a rare condition in which babies have unusually small heads and brains.
When her second daughter, Lola, was also born with microcephaly five years later in 2006, Gwen started a blog about the family called The Hartley Hooligans.
Traffic to the site has spiked lately, with visitors from around the world because of the spread of the Zika virus, which Brazilian authorities have blamed for causing a dramatic rise in babies there being born with the condition, though more research on the possible links is necessary.
With fears rising that a Zika outbreak in the US is highly likely, worried parents-to-be have clicked on to Hartleys site to read her always frank and often funny observations about raising children with microcephaly.
It was a complete shock, she said of Claires diagnosis. We had had a normal sonogram and we had absolutely no idea anything was wrong. The couple, who live in a suburb of Wichita, Kansas, already had a healthy boy, Cal.
There was no family history of the defect. Even after genetic tests, nearly 15 years later the Hartleys do not have an explanation for how Claire developed microcephaly. Her other medical problems include dwarfism, spastic quadriplegia cerebral palsy, epilepsy, scoliosis and cortical visual impairment. Though a doctor said she was unlikely to live much beyond her first birthday, she will turn 15 in July.
The Hartleys were given a 25% chance that their next child would have microcephaly. Lola had a normal sonogram at 18 weeks; at 22 weeks hers started to show some slight lags, about two weeks behind in head measurement, which they told me was still within normal limits, Gwen Hartley said.
Another scan a month later confirmed the news they had dreaded. The very first reaction that Scott and I had when we found out that Lola was also microcephalic, we both looked at each other. The radiologist or whoever was doing the sonogram said: Her head is now five weeks behind, she said. And we literally looked at each other and laughed. I think it was just total disbelief. And then within a minute we were both bawling.
Lola shares many of her sisters medical problems, though unlike Claire, she does not need a feeding tube to eat. Her seizures are shorter but more frequent. By the age of nine she weighed only 12lb and was about 2ft tall. Claire is below 3ft.
We know that our family is definitely not the norm, Hartley wrote on the blog. We know that we are basically a walking freakshow when we go out in public (!), as we have not one tiny-headed, non-mobile, non-verbal dwarf, but TWO. We feel the pity and the judgment, we hear the comments, questions & 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 wouldnt change one thing about our life or what weve been through. We only wish everyone could feel what *WE* feel on a daily basis.
Many of the blogposts are upbeat, such as the entry from 15 January detailing the familys desperate attempts to find Lolas missing favourite toy: Bok, a tiny rubber chicken. On the site, Gwen describes herself as a real-life, damn near Snow Fing White (super pale AND gifted at dwarf wrangling).
She started writing as my way of sorting through emotions and dealing with difficult situations that come my way and processing things. Its my outlet for humour, she said. Theres some days where if I didnt laugh Id be crying. Its an emotional rollercoaster, the highest of highs and the lowest of lows and not a lot in between.
Claire may never walk unaided. But with the help of therapists, the girls fine motor and communication skills have developed.
Their little accomplishments mean so much. Little things that you wouldnt think would be that meaningful for somebody else, for us its huge. The other day, Lola grasped my finger, Hartley said.
Microcephaly occurs in the US at a rate of between two and 12 babies per 10,000 live births, according to statistics cited by the Centers for Disease Control and Prevention. It can be caused by genetic factors, infections, severe malnutrition and exposure to toxic substances such as drugs and alcohol.
Hartley hopes that the attention on Zika will raise awareness and analysis of the condition, which can vary greatly in severity. I think its not talked about. I think that the Zika virus is the first time its really been in the public this way, she said.
Weve celebrated Microcephaly Awareness Day for years and it seems like most people dont know what it is. I still get asked all the time: Whats wrong with your daughters? And Im thinking its obvious because their heads are so small.
Hartley said that people have reached out to her on Facebook. I certainly dont have all the answers but I just remember wishing that I had somebody who could hold my hand and walk me through things at the beginning, and if I can help do that with other families, I want to, she said.
I tell them that theyre never going to know how strong they can be, that their child is going to make them the best version of themselves, that they can totally do this. I want them to know its going to be hard but its going to be the most rewarding experience of their life.