Live Anencephalic Organ Donation

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One of the most sickening and infuriating things about carrying a baby with anencephaly is that the medical community views these babies as brain dead and with a lack of “personhood” (the quality or condition of being an individual person). Often times this leads to a push to offer these babies up for organ donation, as if to say they can live on in another’s baby. Here’s the problem with that logic, these babies are individual people with likes and dislikes, they may be missing parts of their brains, but they are still people and any mother who has carried one of these babies will testify to that. If they are born alive, they are often cognizant (although they may lack the ability to communicate), and they are absolutely not brain dead, or vegetative.

To donate the organs of an anencephalic baby (which does happen), a surgeon would have to take a living and aware baby, put it under anesthesia and remove it’s organs piece by piece. This sickens me. A study in 1988 indicates that anencephalic babies are functionally closer to normal newborns than they are to adults in chronic vegetative states. How then is it ok to treat them so brutally? Germany, Japan, and Holland have programs in place for anencephalic organ donation, and many are trying to start programs like that here in the U.S. This cannot happen.

Anencephalic Monster

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Last night, in an effort to learn more about exactly what causes death in anencephalic babies, I stumbled across the work of a midwife who in the ’80s worked to end the medical term anencephalic monster. Never once have I thought of Brielle as a monster. Brielle doesn’t look like other babies, and she wont always act like other babies. But no matter her disability, she is not a monster, and she deserves a chance at life no matter how short her life is. And I’ll fight for that right until my last dying breath. It hurts to think she wont be with us for long and it tears me apart to feel how happy and special she is and to know that once she’s born the clock starts ticking. But already her little life has provided David and I with more love and happiness than anyone can imagine. She’s beautiful and special. She likes it when I talk to her and she loves to hear her Daddy’s voice. She’s perfect and if given the chance to do it all over again I’d choose her every time.

What Can a Fetus Do?

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Super long post, but really worth the read, especially for any expectant moms and anyone wanting to have kids in the future.

Having gastroparesis has made me extremely sensitive to how my body works, and as a plus, has made me very sensitive to all of Brielle’s movements and I’ve learned to distinguish her different kicks, and her different responses to things. While I know that what she does is real and not a delusion on my part, I wanted to have some proof for others, that when I say she hears me, she dances, she likes pineapple, others understand that, yes, a baby in utero can and does do those things. They have feelings, they react to pain, they are sensitive to touch, etc. So I’m going to share some information on what is currently known about fetal development and I’ll provide links for reference, and in another post I’ll talk about how I’ve noticed differences with Brielle based on her diagnosis of anencephaly.

  • At 7 weeks a fetus emits a stress hormone to pain.
  • At 9 weeks a fetus can hiccup.
  • At 9 weeks a fetus can react to loud noises.
  • At 9 weeks a fetus begins to smell.
  • At 10 weeks a fetus begins to urinate.
  • At 10 weeks a fetus “moves its arms, ‘breathes’ amniotic fluid in and out, opens its jaw, and stretches. Before the first trimester is over, it yawns, sucks, and swallows as well as feels and smells.”
  • At 13-15 weeks a fetus has mature taste buds.
  • At 15 weeks a fetus begins to swallow amniotic fluid (amniotic fluid tastes and smells like the foods the mother eats). “The fetus likes certain tastes more than others, and will drink more amniotic fluid if it tastes sweet.”
  • At 16 weeks a fetus begins to hear.
  • “Neuroanatomical pathways necessary for processing pain, similar to those observed in adults and older children” begins at 18 weeks.
  • At four months a fetus responds to light.
  • At 20 weeks a fetus responds to touch.
  • At 22 weeks an aborted fetus is required by law to receive pain medication before the procedure begins.
  • At 24 weeks hearing development is complete.
  • “From six months onward, your baby’s sense of awareness of the world outside the womb grows exponentially. This is because her brain cortex is developed enough for thinking…you can also use noises to teach your baby when to kick.”
  • At six months: “Sonograms taken while parents yell at each other show the baby’s entire body flinching in agitation. They also often cover their ears.”
  • At 32 weeks a fetus is behaviorally the same as a newborn “the
    fetus can feel, dream, even enjoy The Cat in the Hat.”
  • “A new study suggests that short-term memory may be present in the fetus at 30 weeks of age. They found that the young neo-nate had a memory of ten minutes duration. By 34 weeks they were able to store information and retrieve it four weeks later (Journal of Child Development, 2009).”
  • A fetus experiences REM and dreams.
  • “The fetus savors its mother’s meals, first picking up the food
    tastes of a culture in the womb.”
  • “Among other mental feats, the fetus can distinguish between the
    voice of Mom and that of a stranger, and respond to a familiar story read to it.”
  • “The human fetus moves 50 times or more each hour.”
  • A fetus is calmed by its mother’s voice, and recognizes its mother’s voice over that of a stranger’s.
  • “A newborn prefers a story read to it repeatedly in the womb…over a new story introduced soon after birth.”
  • “Newborns can not only distinguish their mother from a stranger speaking, but would rather hear Mom’s voice, especially the way it sounds filtered through amniotic fluid rather than through air. They’re xenophobes, too: they prefer to hear Mom speaking in her native language than to hear her or someone else speaking in a foreign tongue.”
  • “By monitoring changes in fetal heart rate, psychologist JeanPierre Lecanuet and his colleagues in Paris have found that fetuses can even tell strangers’ voices apart. They also seem to like certain stories more than others.”
  • “The fetus can listen, learn, and remember at some level, and,
    as with most babies and children, it likes the comfort and reassurance of the familiar.”
  • “The older fetus can sense what the mother is feeling. If the mother feels stressed or anxious playing a computer game, scientists have shown that the fetal heart rate goes up while she is playing it.” I have noticed this with Brielle as early as 21 weeks.
  • “Researchers at the University of Turin and the University of Panama in Italy used ultra soundography to demonstrate that social interaction exists between twins in the womb as early as the 14th week of gestation. By the 18th week they spent more time in planned contact with their sibling than themselves. The results suggest that twin fetuses are aware of their counterparts in the womb, prefer to interact with them, and respond to them in a special way.”
  • “An unborn child can sense and react to emotions such as love and rejection but also to more complex emotions such as ambivalence and ambiguity.”

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