Bianca's Medical Fund

My daughter, Bianca, is now 6 years old and she is 3'8 weighing 37lbs. In her short life has undergone more than anyone could imagine. It all started when I was 19 weeks pregnant and found out her intestine developed outside of her body. Then at 24 weeks pregnant I found out the skin around a large amount of her intestine that was out of her body, had closed off and lost all blood circulation. Our surgeon, was Dr. Shaaban. He was amazing! He was there from the start, the delivery room, and until the day he left the University of Iowa Hospital and Clinics and moved to the Cincinnati Children’s Hospital. I delivered Bianca at 34 weeks after 34 hours of labor,  and we spent 4 months straight in the NICU.




My daughter was left with 10% of intestine that the human body should have and less than half a colon. She now lives with an extreme case of Short Gut Syndrome. I was told that if she lost anymore she would not have lived. At 3 months old she had her life line placed. Her life line is a central line IV that goes into a main artery above her heart. She has gone from 24 hours of TPN to 12 hours of TPN every night along with 12 hours of tube feedings at the age of 6 years old. At about age 2, she was also given a G-Tube, which is a permanent feeding tube in her belly.  In these 6 years, we have probably spent a year’s worth of time in hospital stays for various reasons. We have fought 2 major line infections that could have killed her. She's undergone about 7 surgeries and multiple procedures.

She has received care at Iowa City Hospital since she was born.  So depending where we lived at the time, we have spent much time commuting, anywhere from 30 minutes to 2 hours each way for her appointments.  I was a single mom until 2 years ago so doing this on my own, holding down a job and running a house has been a struggle.

Back in 2014 I was forced with the decision of having her bowel lengthen surgery done by a different surgeon than Dr. Shaaban. Dr. Shaaban was good friends with the man who created the bowel lengthening surgery they wanted to perform on her, which is called the Step Procedure, so I would have preferred him but since he wasn't close enough I had to go with a new surgeon. I was extremely hesitant, but instead of saying no to that surgeon and going to Cincinnati to have Dr. Shaaban do it, I conformed to what they wanted thinking it was in the best interest of Bianca and had the new surgeon perform the Step Procedure.


Now, in 2016, Bianca has become extremely anemic since doing procedure.  She has had 3 iron transfusions and takes iron medication 3x a day on top of other various medications daily.  She is now losing chunks of her hair due to iron deficiency.  We are fighting to keep her iron level even, close to a low normal range. We recently found out she is bleeding internally. She's been bleeding from the gut since they did the Step Procedure.  Being she has a Short Gut she has bowel movements a lot. So every time she goes to the bathroom she's losing more blood. We did a scope down her throat and up her rectum to see if we could find the bleed but had no luck in finding where she is bleeding. They did find lumps on the intestine and a inflamed colon that had to be biopsied. So on top of an internal bleed, I find out even more problems have arisen with her condition.

I am left with 2 options.  The first option is to give her iron transfusions on a regular basis, that will essentially kill her liver, and as she has Lipids in her TPN they already are hard on her liver. She is already is on medication because of elevated liver enzymes. The second option is to open her up again and let the surgeon who messed her up to begin with go in and hopefully find the bleed or possibly not find it and lose even more intestine, that she can't afford to lose.

Since this is now my 2nd bad experience having someone other than Dr. Shabban perform surgery on Bianca.

Our doctors and maybe have already been in contact with Dr . Shaaban and Cincinnati Children Hospital. We've agreed to do another procedure on her which requires her to undergo anastasia yet again to hopefully find the bleed this time. We've all agreed that once we find the bleed it would be in the best interest to go in repair the bleed and get her back into good health. 
At 6 years old this little girl has gone threw more than most could imagine. And what people fail to understand, this condition never going to go away. This is her life. This is my life with her. And now it's time I take her elsewhere to get her even BETTER care than she's already receiving to get her back into good health.

Our home life consists of a single income which is my husband who works long hard hours as a mechanic. Currently I am a full time student who just went back to school to work on my degree to become a substance abuse counselor. We have 3 kids and a home that has required a lot of work, from the roof, to our kitchen ceiling caving in, to black mold found. It seems like it never ends. I'm not one to ask for help. But I am reaching out to help my family in this time of need. With the extra expense just to travel a little over a hour to the University of Iowa for G.I appointments and iron infusions, my husband has missed time from work because he refuses to miss any of her appointments, and now us looking into other options and opinions on Bianca’s current situation. We are in a need of help. I want to make sure I'm making the right decision for her, and getting her the best possible care available to help her get well again. 





Cincinnati is our #1 choice. I know he will do what is best for her and get her back to a stable state so we can continue our lives as we once knew it. I just want the best for my daughter. I just want her healthy again. I don't want to lose her. Ever.

Any support you could provide will be greatly appreciated!  She is a beautiful and strong little girl!