The Reason

This blog was started as a way for me to record our, my daughter Luisa and our family's, journey with Amniotic Band Syndrome that presented itself on the head of our sweet daughter. And has turned into a journey of dealing with a fatal prognosis, and the very premature death of our sweet baby. My great hope is that we might be able to help at least someone, if not more, by sharing this experience.

Wednesday, December 15, 2010

Beauty for Ashes II

With this experience I have done quite a bit of searching on all sorts of levels. I knew I wanted to record this experience, and as I was starting this blog I just started feeling frustrated, and getting kind of mad at the stupid amniotic bands that are so destructive, and this ABS that is so mysterious as well as the Acrania. It's silly, but I was mad at those things. In my frustration I googled, "What is Acrania", and what came up in the search was this: a blog set up as a type of memorial to a sweet little girl who was given the same diagnosis as my sweet little Luisa. I cried and cried, for many reasons. But, one of those was how these wonderful parents, this inspiring mother traded her ashes for beauty. After reading about sweet baby Karinne, and her equally sweet mother Kara, I felt so comforted and reassured that this experience can and will be a beautiful experience for me, and Luisa, and our family, and anyone else who wishes to join us. I will be forever grateful for that google search.

The connection I made with Kara brought me to another blog that is also so, SO inspiring, and moving. It is the true story of beloved Vitoria from Brazil and her amazing parents. Vitoria, while in her mother's womb, was also given the fatal prognosis due to Acrania. But, this sweet child lived! And she still does today at 11 months old. I am so moved and inspired by her parents joy and gratitude at the miracle that has happened in their lives. Another amazing example of trading the ashes of life for something beautiful beyond compare.


  1. My thoughts and prayers are with you and your baby girl.

  2. I came over to your site from Kara's blog. I want you to know that you, your family, and sweet little girl are in my prayers. We found out Nov. 30, 2009, at our 20 wk. appt., that our son had Potter's Syndrome and would not live outside of the womb. I know how devastating such news can be. Praying, praying, praying.

  3. I'm so sorry to hear you are going through this! I'm so glad you found Kara though - she's such a sweet spirit to have at a time like this, I'm sure.


  4. Dear Kat,

    I am sorry you are going through this difficult time with your pregnancy. I will be praying for Luisa and for your family.

    My niece was born with acrania about a year ago. She is miraculously still alive (she had surgery at 4 months to cover her head with skin and membrane.
    You can contact my sister for further details.
    She also has a blog in English:

    God bless you all

  5. oh, i just saw you already have my sister's blog in here. I hope her experiences can be helpful and inspirational!