Friday, October 2, 2009

Spina Bifida Awareness Month

A shout out and CONGRATULATIONS to the Burr family (see their blog link on the bottom right) and the birth of their little girl last 9/23/09. What a courageous family to undergo the in utero fetal surgery!

Last weekend we got to participate in a national walk for people suffering from Arnnold Chiari brain Malformation, often referred to as ACM. We met a lady from our church that has ACM I. She worked hard to organize and get information out about Chiari and its terrible effects. Our precious Hayden was diagnosed with ACM II which means that his part of the brain that controls his nervous system is compressed and under pressure. ACM II is often associated with Spina Bifida. To learn more about ACM please visit:

Along with this, October is Spina Bifida Awareness Month!
It was a year ago that we learned the devastating news that our precious baby boy was diagnosed with Spina Bifida. The race was on to learn as much as possible to help our unborn son. Our resources for information seemed limited. Doctors could diagnose, but prognosis of the day-to-day life of the children and parents was hard to find. For those families that we were able to talk to, they brought us great hope. For that reason, we continue our blog publicly so that we may give others hope and share our happiness and triumphs over challenges.

Spina Bifida is a major birth defect of a baby's spine. It is one of the most common, permanently disabling birth defects in the United States.

Spina bifida occurs within the first few weeks of pregnancy, often before a woman knows she is pregnant. It happens when the spine and back bones do not close all the way. When this happens, the spinal cord and back bones do not form as they should. A sac of fluid comes through an opening in the baby's back. Much of the time, part of the spinal cord is in this sac and it is damaged.

Most children born with spina bifida live full lives, though they often have lifelong disabilities and need many surgeries. Some of the problems that a person born with spina bifida might face include:

• Not being able to move lower parts of their body. (Some might need to use crutches, braces, or wheelchairs to get around.)
• Loss of bowel and bladder control. (Some might have to wear protective clothing. Others learn new ways to empty their bladders and bowels.)
• Fluid building up and putting pressure on the brain (hydrocephalus), which needs to be fixed with an operation.
• Learning disabilities.
• Allergy to latex (a created material found in some rubber-type products such as balloons or hospital gloves).

All children born with spina bifida don't have the same needs. Some children have problems that are much more severe than others. Even so, with the right care, most of these children will grow up to lead full and productive lives.


Becky said...

good job Adrienne!!! You are amazing. Why do we not live closer together.... Maybe one day!

Momto14 said...

This is wonderful to share all the information on your blog about SB. Are you guys doing an adopt a ghost fundraiser? Visit my blog for more information but it goes through the month of October for the SBA.

Sarah Hull said...

Adrienne, SO nice to meet you! Your family is darling. That is awesome that you got to participate in the Chiari walk! Your Hayden is a DOLL!