Madi's Story

Madalynn Arrives:
Our daughter Madaylnn arrived in May 2006. She was crying and strong. Minutes after her birth the nurse noticed she had only 4 toes. Minutes after that when she stretched Madi out to measure her length she realized that her right leg was considerably shorter than her left. The doctor, nurses, my husband and myself were in shock. My pregnancy had been normal and uneventful just like my previous two, the routine ultrasound around 20 weeks did not show any anomalies. Our pediatrician came to examine her and ordered x-rays and ultrasounds to look for any life threatening or related anomalies. The ultrasound came back normal. The x-rays showed that she had no fibula, and that she appeared to have a malformed hip. No one could tell us what this anomaly was called.

We took Madalynn home to wait two weeks until we were able to see a pediatric orthopedic surgeon at Children's Memorial Hospital in Chicago. June 2006 was the worst Dr. visit of my life. The orthopedic doctor himself was wonderful, he spoke with us for over and hour and a half. He explained that from the x-rays taken on the day of her birth that he could diagnose Madi with PFFD and CLFD. He told us that he was pretty sure even though the x-ray was dark that she had no hip joint, that her femur came to a point a few inches above her knee, that her tibia was bowed, and that she was missing her fibula and one toe. Limb lengthening surgeries would not be a option for her, and our best bet would be to amputate her foot and go with a full leg prosthesis, belted around her waist. I broke into tears. We had gone to this appointment thinking she would have limb lengthening surgeries or something done to help the deformed hip. The doctor tried to console me, and tell me she would walk, she would run around with all her friends. He recommended we get a second opinion.
We asked for a recommendation at the University of Wisconsin, and saw the doctor in July. He confirmed the diagnosis but said her foot was so straight and so sound structurally that it would be a good base for a prosthesis. We asked about having an ultrasound of the hip to know for sure the status of the hip. It confirmed that there was no hip joint, just a few inches of femur above the knee. We discussed the rotationplasty surgery we read about but were told that because she didn't have a hip joint her leg would rotate back and it wouldn't work. The doctor also wrote a prescription for physical therapy to stretch the hip, straigthen the knee, and improve the flexibility of her ankle to prepare for a prosthesis down the road.

In the meantime we had a local businessman turn Madi's name into Shriner's Hospital for Children in Chicago. An application came a few days later, we filled it out sent it back and two weeks later received a call that she was accepted and they wanted to see her that week. Aug. 2006 Madi made her first trip to Shriner's. Dr. Ackman confirmed the diagnosis, but said she could have the rotationplasty surgery when she is 4 or 5 if the knee and ankle are strong enough. He gave us options, amputate foot, for a more cosmetically pleasing prosthesis, or keep the foot and go with a full leg prosthesis (said not need to belt) . We chose to wait to amputate until Madi could be part of the decision since we were reassured that we would not be limiting her ability to get around and play with other children by not amputating. We left in good spirits to wait until she was closer to 10 months old and pulling up on furniture, to come back and have her cast and fitted for her prosthesis.

Visit to the Genetisist:
November 2006 we saw a genetisist at the University of Wisconsin Hosptitals and Clinics, who specialized in bone diseases. He confirmed the x-ray results but also added that her pelvic bones were very good structurally and very symetrical. This would help her in the future with stability he said. He gave her a genetic diagnosis of Femoral-Fibular-Ulnar Dsyplasia. We learned that it is not passed on genetically and that it was not caused by something environementally during my pregnancy. He sited a research case of 700 people that had a hypothesis that it could be caused by a vascular incident during the time the limbs are forming. It was a great relief to know that our children would not pass it on, and that essentially nothing had caused it, it just happens.

First Prosthesis:
March of 2007 we returned to Shriner's. Madi had been pulling up on furniture and standing for a few weeks. I knew in my gut she was ready to take the next step in this journey. Shriner's ran a new set of x-rays and gave the go ahead for her to be cast and fitted for her prosthesis.
We went to the prosthetic shop and she was casted and fitted that day. We returned a week later to have an initial fitting. When they had me stand her up, she stood soley on her right leg and prosthesis and bent up her left leg. I was close to tears with joy. She was bearing all her body weight on the prosthesis. I couldn't have been more overjoyed. On March 23 we returned to pick up her leg and go to Shriner's. Again when she tried her leg on for the doctor she stood soley on her right leg bending up her left leg. The doctor was impressed as well.
April 2007:
Madi began taking assisted steps holding onto my hands and the physical therapists, or behind a walking toy, without us proding her to move the leg. I was amazed and the tears of joy once again welled in my eyes. She'd only had her leg a month and she was already getting the hang of it.

It has been a long first year, but I know that God gave Madalynn to us as a wonderful gift. She amazes me daily, and helps me keep my perspective on what really is important in life. Her older brothers are beginning to understand at 7 and 4 that she will be okay, and that she is going to be able to play like them, she just does things her own way. I am amazed at all the outporing of prayers, support, and encouragement that my husband and I have received from co-workers, family, friends, and accquaintences. We are truly blessed that everyone who has played a part in our Madi's care thus far on our journey has been amazing. God has worked through these people, and put them in our path along the way when we needed them. I am still learning all I can, we subscribe to In Motion Magazine and have a membership with the Amputee Coalition of America. I also joined the Family Advisory Council for the Department of Specialized Care for Children in our state. I am trying to educate myself as much as I can in order to be the best advocate I can be for my daughter. I would welcome the opportunity to talk with any parents who have been down this road, and learn from your experience.