Andrea's Malrotation Surgery in CLE

My daughter hasn't been able to eat any food for the last six months. With her health declining we are urgently trying to get her to the Cleveland Clinic in Cleveland, Ohio, for major surgery to correct her condition - intestinal malrotation.
Andrea was born with intestinal malrotation, a congenital birth defect. It took twelve weeks and numerous hospital visits to diagnose condition as an infant. Finally, she underwent emergency surgery for volvulus (twisted bowel). The surgery she had is called the Ladd’s procedure, developed by William E. Ladd in the 1930s. This outdated procedure left her small intestine on her right side and her large intestine on her left and she also underwent an appendectomy. Throughout childhood and her teen years she struggled with episodes of pain and vomiting. In her twenties Andrea had numerous emergency room visits, specialist appointments, tests, procedures and many misdiagnoses. Despite these challenges, Andrea ran varsity cross country for her university, was a competitive equestrian and a special education teacher.

A normal gastrointestinal system:

Andrea's system (MRI):
The last year has been incredible difficult for Andrea with her health declining rapidly. She was teaching at an amazing school when her symptoms forced her to leave her position. The simple task of eating was incredibly painful for her. By July, Andrea's registered dietitian had put her on a complete liquid nutrition diet and by August she stopped being able to tolerate anything by mouth. She was admitted to hospital for malnutrition, had a PICC line inserted in her right arm and was put on Total Parenteral Nutrition (TPN) or in other words IV nutrition. Being on TPN is very difficult mentally for Andrea, as she hasn’t eaten in six months. IV nutrition comes with very serious risks. The short term risks include blood clots and PICC line infections, while the long term risks include liver damage and bone disease. TPN is causing her liver enzymes to rise increasing the need to act quickly.

Early in 2017, Andrea found a malrotation support group on Facebook and heard about a transplant surgeon in the United States who had developed a surgery to correct a patient’s malrotation after they have already had the Ladd’s procedure. Andrea contacted Dr. Kareem Abu-Elmagd directly sending screenshots of her CT and MRI scans. Just by reviewing this information he wanted to do the surgery right away. She sent all her official documentation and imaging to his office at the Cleveland Clinic and began the process to get her much needed surgery. In October, she went to the Cleveland Clinic for a consult, where he confirmed she was in gut failure, needed the surgery or would end up needing an intestinal transplant - a procedure with incredibly daunting survival rates. Along with the help of her gastroenterologist, our family doctors, Dr. Abu-Elmagd and some of his malrotation patients we assembled and submitted a comprehensive Out of Country Prior Approval application for OHIP (Ontario Health Insurance Plan). OHIP’s reply was they would not accept our specialist’s recommendation alone as they requested addition support from a specific type of surgeon. This means more waiting and since this is a time sensitive manner, we have requested the assistance of some politicians in all levels of government. Dr. Abu-Elmagd is the only doctor in the world that fully corrects intestinal malrotation. In his procedure he assesses the organs to make sure they are in working order then places the patient’s intestines in the anatomically correct position. Depending on if and what OHIP will cover, funds may be needed for some or all of the following:
1.  Malrotation Surgery
2.  Hospital Stay
3.  Medication
4.  TPN (incredibly costly)
5.  Outpatient services/emergency medical funds while in United States
6.  Imaging, tests, blood work
7.  Cleveland Clinic outpatient appointments
8.  Travel to and from Picton, ON and Cleveland, OH
9.  Accommodation in Cleveland, OH
Andrea is required to stay in Cleveland for one to two months after surgery. Once this nightmare is over and she has fully recovered she hopes to go back to teaching special education, running cross country races and competing in horse shows.
We are so thankful for all of the support we have already received from family, friends, dietitians, nurses, local doctors and our amazing little community. We appreciate any donations you can offer so Andrea can get the malrotation surgery she urgently needs.

Keith Taylor