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Related: Editorials & Other Articles, Issue Forums, Alliance Forums, Region ForumsWhat this amazing mom of two girls with microcephaly has to say about Zika scare
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/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 thats been extremely painful for Hartley.
Part of me is grateful for the awareness of something weve been dealing with for 15 years, part of me feels sad for the families because I know what theyve been through, twice. Its 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 wouldnt purposely want another child to be affected, but Im happy that theyll know what I know. I would not have chosen it prior to my girls, but I didnt know what I was missing out on.
smirkymonkey
(63,221 posts)"Im sad they have to go through this, but they have it, so you can optimize the heck out of that kids 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
(78,249 posts)Shes learning that she has a say in this world, Hartley said.
pnwmom
(108,990 posts)Quadriplegia, spastic limbs, cerebral palsy, seizures and not being able to speak isn't "typical."
KamaAina
(78,249 posts)Contrary to popular belief, people with significant disabilities often lead rich, rewarding lives.
pnwmom
(108,990 posts)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
(7,670 posts)rewarding life is?
From the descriptions, they are, at best, responding to stimuli.
REP
(21,691 posts)Or are capable of leading a "rich, satisfying life." Please do not trivialize or fetishize those with disabilities. It is dehumanizing.
proverbialwisdom
(4,959 posts)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 infants 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 newborns 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 childs 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 Childrens Hospital who specializes in brain malformations.
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.