Hannah's Quest to beat Spina Bifida

As many of you know Hannah was born with spina bifida. It is a birth defect that affects the spinal cord and I encourage everyone to find out what it is and how it affects people. She has over come so many things we were told she wouldn't, thanks to the grace of God.



She also has what is called a neurogenic bowel and bladder. This is a spinal cord injury that interrupts the communication between the nerves in the spinal cord that control bladder and bowel function and the brain, causing bladder and bowel-function problems. Not only do you have no control over your bladder and bowels (which means accidents can occur anytime, anywhere whithout your knowledge)  but you also do not have the ability to empty them.

She has learned to handle her bladder on her own. After a bladder augmentation, bladder sling, and a surgery called a mitrofanoff she is now able to catheterize herself through a small opening in her side (stoma) and stay completely dry between catheterizations.



Her bowels on the other hand have been a bit more challenging for us. She has a very dilated colon due to severe constipation when she was very little. She had a surgery called a MACE when she was four years old. This procedure involves snipping the tip of the appendix ( which is connected to the large intesine or colon ) and attaching it to the abdominal wall, in her case her belly button. We enter a catheter into this opening ( stoma ) each day and fill with a solution to empty her bowels. The goal is to be able to flush the bowels within one hour each day and keep her from having any stool accidents. It is pretty much an up side down enema. In Hannah's case we are still having difficulty getting this succesful, but not for lack of trying. She will have her fifth surgery on her stoma this Tuesday August 4, 2015. She also does daily irrigations through this stoma which takes us anywhere from an hour and a half to sometimes 3 hours a day. She then still has to worry about bowel accidents during the day because after five years of working directly with the doctors we are all still unable to get this to work the way it should.



Anxiety has been a big part of her life since she is older and constantly lives with fear of embarrassment. She is very discrete and doesn't share her struggles with anyone except immidiate family. She is now on medication to help her with anxiety and stress caused by this issue. Something as small as going swimming is a huge issue in her life. It has to be well thought out and planned ahead so we can make sure her bowels are clean enough to get in water.



We have the oppertunity to take her to a bowel management program in Colorado where they concentrate specifically on the bowels. They will run some test to see what kind of motility she has in her colon,  then they will begin treating her and monitoring her ability to empty by doing daily x-rays. A team of Dr's will get together daily to discuss a treatment plan for the next day until we get this right. We have been playing the guessing game with her for five years and would really like to have this under control so she can live a full active life. We will be at Colorado Childrens Hospital for eight days.  



No more having to stay inside and watch the other kids ride bikes or have to miss cheer practice or a baskball game or swim party because your bowels didn't want to behave that day. This is a great oppertunity for her to also meet other kids with this same condition, because many days she feels so alone and like no one else has to go through what she does.  This isn't something she wants to share with friends because it is embarrassing to  her and as a kid this is hard to understand. It took me many years to grasp all of this.



We are so greatful for eveyrone that supports us and loves Hannah. Please share this page. This is an amazing oppertunity for her. God Bless You !!!