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Thread: Zika virus: President Obama calls for urgent action

  1. #16
    Elite Member MohandasKGanja's Avatar
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    I found this article today on The Guardian. The two things that stand out are how difficult it is to detect microcephaly early in a pregnancy, and how difficult it is to raise a child with it:

    Kansas mother of two kids with microcephaly on the joy and struggle: 'We love our life' | US news | The Guardian

    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.




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    Gwen Hartley with son Cal and daughters Claire and Lola: ‘Their little accomplishments mean so much.’ Photograph: Courtesy of the Hartley FamilyWhen 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 Hartley’s site to read her always frank and often funny observations about raising children with microcephaly.
    “It was a complete shock,” she said of Claire’s 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 sister’s 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 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.”
    Many of the blogposts are upbeat, such as the entry from 15 January detailing the family’s desperate attempts to find Lola’s missing favourite toy: Bok, a tiny rubber chicken. On the site, Gwen describes herself as “a real-life, damn near Snow F’ing White (super pale AND gifted at dwarf wrangling).”
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    She started writing as “my way of sorting through emotions and dealing with difficult situations that come my way and processing things. It’s my outlet for humour,” she said. “There’s some days where if I didn’t laugh I’d be crying. It’s 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 wouldn’t think would be that meaningful for somebody else, for us it’s 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 it’s not talked about. I think that the Zika virus is the first time it’s really been in the public this way,” she said.




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    Lola and Claire in September. Photograph: Courtesy of the Hartley family“We’ve celebrated Microcephaly Awareness Day for years and it seems like most people don’t know what it is. I still get asked all the time: ‘What’s wrong with your daughters?’ And I’m thinking it’s obvious because their heads are so small.”
    Hartley said that people have reached out to her on Facebook. “I certainly don’t 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 they’re 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 it’s going to be hard but it’s going to be the most rewarding experience of their life.”

  2. #17
    Silver Member a31cefiro's Avatar
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    I'm very sad that there is no New Zealand on that map...what, are we so small we can't fit a mosquito here?

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    Elite Member o0Amber0o's Avatar
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    This is really scary IMO - especially as someone who is making attempts at preparing my body for a pregnancy - this is definitely in the US and that to me is a close enough to home to freak me out.

    I'm not sure how far ultrasound technology has come in the past 10 years, but I will say that in November I had a poor prenatal diagnosis at my 18 week scan and one of the issues was the head was measuring 5 weeks behind. It makes me wonder if it would be easier to discover a fetus with a microcephaly with the standard technology that's available now (in the US anyway)?
    All you can do at life is play along and hope that sometimes you get it right.

  4. #19
    Elite Member stef's Avatar
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    Vatican Representative: Abortion Is an 'Illegitimate Response' to the Zika Virus


    Joanna Rothkopf
    Yesterday 12:25pm
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    Pope Francis did not bring up the Zika virus during his six-day visit in Central America, but that didn’t stop the Vatican from weighing in.

    On Tuesday, a Vatican representative made a statement discouraging abortion, despite the likely connection between the virus and microcephaly, a birth defect that leads babies to be born with abnormally small heads and decreased cognitive abilities, and ignoring calls from several countries’ governments that women refrain from getting pregnant for two years.


    “Not only is increased access to abortion and abortifacients an illegitimate response to this crisis, but since it terminates the life of a child it is fundamentally not preventative,” said Archbishop Bernardito Auza, the Vatican’s UN representative.

    “Regardless of the connection to the Zika virus, it is a fact of human existence that some children develop conditions like microcephaly, and that these children deserve to be protected and cared for throughout their lives, in accordance with our obligation to safeguard all human life, healthy and disabled, with equal commitment, leaving no one behind.”


    The Washington Post reports:


    If women in Catholic-heavy Latin America do get pregnant, abortion is illegal in most countries in the region, though some have exceptions in cases of rape, fetal impairment or danger to the life of the mother. Earlier this month, the UN’s Office of the High Commissioner for Human Rights called on Latin American countries to repeal their policies restricting contraception and abortion rights.

    Last week, a representative from the National Council of Bishops in Brazil doubled down on the Church’s opposition to birth control as well:


    “Contraceptives are not a solution. There is not a single change in the Church’s position,” Bishop Leonardo Ulrich Steiner said, according to the New York Times.
    Instead, the representative told couples to abstain from sex or to use “natural family planning,” which involves women only engaging in sex during the time in their menstrual cycle in which they are least fertile. This method, evidently, puts all of the burden on women to know when to have intercourse, and conveniently ignores the other party involved.

    Meanwhile, newly pregnant women in Zika-affected countries have taken to pleading on the internet—in particular to an organization called Women on Web—for emergency contraceptives and abortion pills.


    “I haven’t seen anything from the governments of these countries themselves that indicate they are reconsidering the restrictive laws because of this crisis. I haven’t seen any of that,” Women on Web founder Dr. Rebecca Gomperts told the Washington Post.
    “The only calls that have gone out from health ministers is ‘Don’t get pregnant,’ which is kind of an unrealistic demand I think, if contraception is not available for the poorest.”


    Update: According to the Chicago Tribune, Pope Francis weighed in, absolutely condemning abortion even in Zika-affected countries, but showing some tolerance for the use of birth control.

    “Abortion isn’t a ‘lesser evil,’ it’s a crime,” he said, referencing a question from a reporter. “Taking one life to save another, that’s what the Mafia does. It’s a crime. It’s an absolute evil... On the other hand, avoiding pregnancy is not an absolute evil. In certain cases, as in this one, such as the one I mentioned of Blessed Paul VI, it was clear.”




    Vatican Representative: Abortion Is an 'Illegitimate Response' to the Zika Virus
    "This is not meant to be at all offensive: You suffer from diarrhea of the mouth but constipation of the brain." - McJag

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