The Story of Faith Hope

I found this blog the other day, written by a woman whose baby has anencephaly. Told by the doctors that her baby would be stillborn or would not live for long, she chose to continue the pregnancy and give birth to her daughter and to love her for as long as she could. The baby is now 41 days old!


5 Responses

  1. I read every single word on her blog. Absolutely amazing.

  2. That is a great blog and a great story. There’s a similar (I think?) story in “Spiritual Midwifery”, isn’t there?

  3. Yes, Baby Ira, who after his birth was taken to the hospital because they were “surely” the best experts to handle such a fragile baby. Five days later, the parents found out by chance that he hadn’t been given anything to eat or drink — he was just being allowed to slowly die, which was what they did with “anencephalic monsters” at the time, as they were termed back then. The parents brought him home and loved him for as long as he lived, which wasn’t long, but longer than many babies with anencephaly.

    You can read Ira’s and other parents’ and babies’ stories here.

  4. That was just an amazing link……an amazing little girl and her mother. I had no clue that babies with anencephaly could live as long as she has, thus far.

  5. AYC,

    Yes, it is unusual, but not unheard of. Here is a blog post with lots of links about anencephaly that I wrote on my other blog. One of the links includes the story of baby Marcela Ferriera, who lived over 18 months! Another link is to the CDC birth-death records query, which shows that 7 US babies with anencephaly lived past 28 days.

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