Nicole 14yr old 5th Hip Revision

My niece, Nicole, was born on February 7th 2000 at the University of Michigan. She was born with a hip defect that was not properly diagnosed. She is in the process of having her hip replaced for the fourth time!

This is her story:

Nicole was born with a congenital hip dysplasia. This was not diagnosed until she was 14 months old. At 21 months old, Nicole underwent her first hip reconstructive surgery in which she had to wear a full body cast from her toes to under her neck. This surgery was unsuccessful at the University of Michigan Hospital in Ann Arbor, Michigan. Just after turning 2 years old, Nicole has another reconstructive hip surgery, but this time at Children’s hospital in Detroit, Michigan and had to wear another full body cast for 8 weeks. This was a successful surgery. Then at age 3, she underwent a minor surgery to get the plates and screws removed from her hip.
Over the years, she had tests and doctor appointments yearly to check everything. But at the age of 9, she started having issues again. At this point, she had to have another reconstructive hip surgery to fix the out of place hip. This surgery was done by her new orthopaedic doctor Dr. Zaltz at Beaumont Hospital in Royal Oak, Michigan. She was took out of school after 8 weeks into the school year and didn’t return that year. She was homeschooled by her 3rd grade teacher Mrs. Butler because of not being able to go to school. During 3rd, 4th, and 5th grade she wore leg braces everyday and underwent a couple of minor procedures. From 6th grade until now due to pain, problems walking, etc. Nicole has been in a wheelchair during school hours if she was able to go to school. Because of these problems, she was home schooled most of 6th, 7th, 8th, and 9th grade. At home, she uses her cane, walker, or crutches to get around. From 6th grade until now (3 years), she had 6-8 surgeries and 4 of them being total hip replacements. In her whole life though, she has had 15-17 surgeries. On top of all the surgeries, she has underwent all kinds of testing such as MRI’s, blood draws, etc.
In January of 2013, she had her first hip replacement. At this point, she changed her orthopaedic doctor because she needed a hip replacement orthopaedic doctor. Her new orthopaedic doctor is her current orthopaedic doctor Dr. Greene out of Beaumont in Royal Oak, Michigan. After surgery, she was doing pretty well for the first couple of months. In about July of 2013, she started having severe pain, swelling, and discomfort in her hip. It was determined that she wasn’t growing any bone on the hip. After this determination, it was best decided to do a second total hip replacement.
On December 27th, 2013, she had a 2nd hip replacement. This new hip was a more aggressive one to help the bone grow. Right out of surgery, she had one issue after the other. She had a lot of pain. swelling, discomfort, etc. It was then discovered in January of 2014 that Nicole had a bone disorder, osteoporosis, a vitamin disorder, and could not produce bone around the hip. After several more tests and doctor appointments, it was decided to do a 3rd hip replacement. This 3rd hip was going to be cemented in to hold the hip in and fix the pain and discomfort. This glue would take the place of the bone.
On March 24th, 2014, she underwent her 3rd total hip replacement. Four to six weeks post surgery, she suffered with fatigue, pain, bone pain, chest pain, itching, etc. The bone pain, chest pain, itching, and fatigue was new for her. The bone pain was all over her body including in her hip, knees, ankles, back, etc. The physical therapy was stopped because the pain and fatigue was getting too bad.
From this point, she went to several specialists including an endocrinologist (bone doctor), rheumatologist, cardiology, allergy, and infectious disease. Also she visited her pediatrician Dr. Yu quite a few times. He had a part of her care by helping Dr. Greene with suggestions  and taking care of her. For one endocrinologist and a second opinion for orthopaedic, she went to the Mayo Clinic in Rochester, Minnesota. The two doctors after several tests, said there was nothing wrong. The second endocrinologist was at St. Johns Hospital. This doctor determined the bone issues such as the osteoporosis. The rheumatologist did 33 blood tests and x-rays. Everything came back negative. Because of the chest pain, she went to see a cardiologist. Everything came back normal there too. After all these appointments and tests, they did a metal allergy test that went to Chicago, Illinois. At first, it came negative because she was taking her allergy medication. They retook the test without the medication and it came back positive to 4 different metals. To be sure, Dr. Perry Greene, suggested they go see infectious disease and allergy. Infectious disease was recommended because in a previous hospitalization, she was diagnosed with a rare bacterial infection. When she went to infectious disease, they said that her bacterial infection was gone and that everything looked good from their perspective. At the allergy doctor, the test results of the metal allergies was confirmed. It was then decided to have a 4th hip replacement.
All of these surgeries, doctor appointments, tests, etc., have been mentally, physically, and financially hard on her and her family. They have a great team of doctors and are trying to figure out why she has had all this issues. According to Dr. Greene, this has never happened to any of his patients in the 25 years he has been a doctor. This is very confusing situation to most people because its so unusual and rare.

On December 29, 2014 Nicoe underwent a 5th Hip Revision.  This surgery has been the most difficult on her body. She was hospilized for 5 days.  She is continuing to problems with her body. Her hip looks very good. Her body is still reacting at this time. Nicole is in PT & is going 3xs a week. Thank you Team Rehab - Woodhaven! Please keep praying for her.