Sunday, December 05, 2010

Re-writing the book on anencephaly

Myah, mother of little Faith Hope, is soliciting stories from other parents of children with anencephaly. Sadly, most of what doctors "know" about this condition is out-of-date and based on prejudice, not experience. It's also based on starting with the way a normal brain functions, and assuming that the anencephalic brain functions the same way -- or rather, that it lacks the functions of the areas of the normal brain that are missing. We have learned that the brain can often compensation for loss due to injury. So how much do we not know about the ways an anencephalic brain compensates?

We need to base our knowledge on experiences and data, not presumptions and prejudice.

Let me share a few examples from online, so you can see the difference between seeing these children as too many doctors do -- as pathology specimens -- versus how their parents experience their lives.

  • From Myah: 19 Days Old: "Faith is doing very well. She is a nice healthy pink colour today. And she is looking prettier everyday, she really is. I don't know if I ever mentioned it before, but apart from a saline dressing on her head (which is changed once a day) Faith is living a completely normal life."

  • Stephanie's story: "My mother leaned down with tears in her eyes and whispered, He is perfect. I knew that the doctors were right about him having anencephaly. I still prayed that when I saw him that it wasn't true. He came into this world screaming just like any other baby. .... He was so beautiful. He was so very perfect except that he didn't have the top of his head. He wasn't deformed in anyway, nor was he blue like I was told he could be. He was absolutely perfect! .... Our little precious son lived for 20 hours before he had a series of seizures that finally took his life. He died in my arms. .... No matter how long I had with my son, Stephen, it was enough to last a lifetime. He is always with me. He was briefly in our arms, but he is forever in our hearts."

  • Liz's story: "I was scared at first, I thought he was already gone, but then he gasped for air and stretched his arms and legs. .... He would blow bubbles and coo. Oh the sound of his sweet little voice, I love it and remember it well!! He held my finger tight and was so warm and beautiful to us! Everyone held him, even Samantha and Sarah. We dressed him in his cute little outfit and Todd put on his little baseball socks. .... William died in my arms at 3:01 pm the same day. I kept Will with me the rest of the day and that night. The following day we cherished the few hours we had with Will before Mr. Dawson came from Dawson Funeral Directors to pick William up from my hospital room. .... You know, William's short life here has changed a lot of people's lives for the better! I have seen people re-examine their faith and relationships. Family members have been brought together and frienships have strengthened, all because of William Jasper Craft!"

    Blackberry said...

    I started reading her blog back when Faith was still alive. What a powerful story, and a moving mother/child bond.
    Faith's mother will certainly change the future for many people.

    Katie said...

    Oh, Myah. I think about her and her beautiful daughter often.