What this amazing mom of two girls with microcephaly has to say about Zika scare

[KamaAina]

https://www.washingtonpost.com/news/inspired-life/wp/2016/02/03/what-this-amazing-mom-of-two-girls-with-microcephaley-has-to-say-about-zika-scare/

After a series of misdiagnoses, the Hartleys, of Kansas, were told Claire had microcephaly, a serious birth defect that causes babies to have extremely small heads and brains, and, in her case, made it unlikely she would live beyond a year. Almost five years later, Claire was defying the odds and, although she couldn’t speak or walk or even sit upright, she was a happy and vibrant child. The Hartleys felt ready to get pregnant again. Rounds of genetic testing had not revealed anything to suggest Claire’s microcephaly was anything but an anomaly....

Until recently, the universe of people who understood microcephaly was limited to the small community of families living with children born with the condition. There are about 25,000 children with it in the United States. But now thousands of women in Brazil reportedly have babies diagnosed with the birth defect, and it has been linked to the also rare mosquito-borne Zika virus. The World Health Organization has declared Zika an international health emergency. Women in affected countries have been urged not to get pregnant.

Claire is now almost 15 years old, and her little sister, Lola, is almost 10. For the first time in their lives, people are paying attention to their condition, and it is terrifying the public. And that’s been extremely painful for Hartley.

“Part of me is grateful for the awareness of something we’ve been dealing with for 15 years, part of me feels sad for the families because I know what they’ve been through, twice. It’s been really emotional,” Hartley, 41, said in a phone interview. “At the same time, I know the joy that can come from having these kids. I wouldn’t purposely want another child to be affected, but I’m happy that they’ll know what I know. I would not have chosen it prior to my girls, but I didn’t know what I was missing out on.”

[smirkymonkey]

1. What is life like for those children?

"“I’m sad they have to go through this, but they have it, so you can optimize the heck out of that kid’s life,” Hartley said of other parents whose babies have microcephaly. “We are all happy. We love our lives.”

However, are the children suffering? What is their quality of life? I admire them for being such good parents, but I honestly wonder what kind of lives these girls are going to have. Will it just be suffering until they die pre-maturely. I don't know how I feel about this. I think if I had to choose, I would rather not be here than to have to struggle through life like this

[KamaAina]

2. Sounds more typical than you might think

But they still have traits of girls their age. Hartley said Claire is a typical teenager who can give her some attitude and a little side eye. Claire is working on raising her arm and learning to crawl. Lola can make choices with her nose. She will sit on the edge of someone’s lap and lean forward and tap her nose on an object in front of her.

“She’s learning that she has a say in this world,” Hartley said.

[pnwmom]

3. They love their children deeply -- that is the same. But these children are not "typical."

Quadriplegia, spastic limbs, cerebral palsy, seizures and not being able to speak isn't "typical."

[KamaAina]

4. No, but their lives are in some ways.

Contrary to popular belief, people with significant disabilities often lead rich, rewarding lives.

[pnwmom]

5. These children are profoundly disabled. Profoundly. They are in pain

and they can't communicate their pain or understand why they are in pain.

I know you mean well here, but be careful not to minimize the seriousness of the problems these families face.

[Humanist_Activist]

6. How do we even know they have the cognitive ability to even understand what having a rich...

rewarding life is?

From the descriptions, they are, at best, responding to stimuli.

[REP]

7. Those with these profound disabilities are not "enjoying" life

Or are capable of leading a "rich, satisfying life." Please do not trivialize or fetishize those with disabilities. It is dehumanizing.

[proverbialwisdom]

8. Nuance, people.

http://www.nytimes.com/interactive/2016/health/what-is-zika-virus.html

5. What is microcephaly?

Babies with microcephaly have unusually small heads. In roughly 15 percent of cases, a small head is just a small head, and there is no effect on the infant, according to Dr. Constantine Stratakis, a pediatric geneticist and a scientific director at the National Institute of Child Health and Human Development.

But in the remainder of cases, the infant’s brain may not have developed properly during pregnancy or may have stopped growing in the first years of life. These children may experience a range of problems, like developmental delays, intellectual deficits or hearing loss.

The consequences can vary widely from child to child. Pinpointing an underlying cause helps clinicians to advise parents about their newborn’s prognosis.

Genetic abnormalities are a common cause. Microcephaly can also be triggered by infections of the fetus, including German measles (also known as rubella), toxoplasmosis (a disease caused by a parasite found in undercooked contaminated meat and cat feces) and cytomegalovirus.

Microcephaly may also result if a pregnant woman consumes alcohol, is severely malnourished or has diabetes. If the defect occurs in a child’s first years, it may be a result of a brain injury during labor.

There is no treatment for an unusually small head.

“There is no way to fix the problem, just therapies to deal with the downstream consequences,” said Dr. Hannah M. Tully, a neurologist at Seattle Children’s Hospital who specializes in brain malformations.

http://www.ageofautism.com/2016/02/pesticides-anencephaly-and-zika-virus.html

Pesticides, Pregnancy, Anencephaly and Zika Virus

Essay, links + some comments (eg, Thomas Insel was on Char(l)ie Rose the other night. There was some discussion of Zika virus. Insel said, approximately, that the problem (microcephaly) did seem -- seem -- to be related to the virus. But, he added, there must be "some other factor" to account for the rise in microcephaly.)

http://www.doh.wa.gov/YouandYourFamily/IllnessandDisease/BirthDefects/AnencephalyInvestigation
http://www.nbcnews.com/health/health-news/rare-birth-defects-still-spiking-washington-state-n86916
http://www.oregonlive.com/pacific-northwest-news/index.ssf/2014/05/sudden_rise_in_washington_pest.html

More.

Multiple judgmental posts on this thread are seriously misguided. Unless it's your life or your child's, it's NOT your call.