Sweet baby Anabelle "Belle" Elizabeth Bisping was born on September 14, 2016 at 7:05 pm.
The doctors believe she has an extremely rare digestive disease that potentially affects multiple organs in her digestive tract.
She can not eat because she can’t digest food. She will have to be “fed” by IV through a central line.
The only thing that has truly corrected the problem in other children is a multi organ (sometimes up to 7 or 8 different organs) transplant. Basically she needs a new digestive system. But of course, surgery of that magnitude carries with it a whole new set of risks and complications. The doctor described it as trading one disease for another with transplant.
We were told that survival rates for the disease are low and long term prognosis is very grim. However, in recent years, they have come to understand the disease much better and there have been many improvements with treatment. With medical advances, they are now able to “manage” the disease and prognosis is improving, drastically from even 5-10 years ago. Basically our doctor said, “Be thankful you are having this baby in 2016 instead of 2010…and in Pittsburgh.”
We are looking at a 2-6 month initial inpatient stay at Children’s. Our Dr. said 2 months if everything goes perfectly according to plan, and 6 months if everything goes awry, and more likely, it will be somewhere in between that range.
If she is going to have this terrible disease, Pittsburgh is a good place, a VERY good place to be for our daughter. Children with her diagnosis have traveled to Pittsburgh from all over the world for treatment and for organ transplant.
Apart from not being able to eat and digest food, she is a completely “normal” child. I know that sounds odd as she isn’t really normal at all. What I mean is that if they can stabilize her and keep her out of the hospital with infection from her IV, she can run, jump, play with baby dolls, go to school, develop and learn as any other child her age can for as long as her organs will tolerate it. There are no brain or developmental problems associated with the disease. It is strictly in her gut. These precious babies look and act normal and you may never know anything was wrong with them… if you didn’t know. She simply, but very un-simply, can’t eat and digest food.
Please pray for us.
All our love,
The Bispings
More details, and updated Blog posts can be found here:
http://www.laurabisping.com/blog/
