On Wednesday, May 25, 2005, we knew as first time parents our world was about to change. We had no idea just exactly what that meant. I had a normal, healthy pregnancy. No complications and no morning sickness. That Sunday night, I started to have pain. No clue it was labor pain until Tuesday after speaking with the doctor because the pain intervals were getting closer. Wednesday around 3:00 am, Steve drove me to the hospital. The time had come to finally meet our baby girl. After pushing for an hour and a half, Madalyn Shea had arrived. We were so excited to see her and hold her. The moment I saw her, it was a flood of emotion and panic. What was wrong with my baby? I knew right away something didn’t seem right. I questioned the doctor and nurses. Explanation – she must have hit your pelvic bone on her way out. In my heart, I knew that wasn’t it. Madie’s head did not look right. Later that day, the doctor mentioned that maybe Madie had this or that. Automatically, we questioned and started researching. That night, the pediatrician came in and said, “Your baby looks odd.” Really?? I was beyond upset that night the nurse brought Madie back to me from the nursery. As soon as I held her, I vowed to Madie that I would love her no matter what. I was her mommy, and I was going to do whatever I needed to do to love and care for her.
Once we came home from the hospital, Steve and I went crazy researching. During those first two weeks home, Steve and I found our answer. We diagnosed our daughter with Craniosynostosis. At Madie’s two week appointment with the pediatrician, she made the connection for us to go to Children’s Hospital in Pittsburgh. That next week, we met Dr. Joseph Losee, cleft/cranio plastic surgeon. During our conversation with Dr. Joe, we told him what our diagnosis guess was. He was amazed. We were correct. He was only going to tweak that to be more specific. In the months to follow, we made numerous trips to the hospital to meet with other doctors and have tests done. Madie was then diagnosed with Craniofrontonasal Dysplasia. Dr. Joe then told us that Madie had to have surgery at nine months old. Surgery had to be done then because her skull was soft and could easily be manipulated. If surgery would not be done, Madie’s brain would not have the room it needed to grow. Increased brain pressure then would cause another list of issues. Steve and I made that decision that whatever we needed to do, we will do it.
A couple of weeks before surgery, Dr. Joe contacted us to tell us that the Discovery Health Channel wanted to do a documentary on one of his patients. He was offering that to us. It didn’t take much for us to decide that this was something we definitely wanted to do. We decided to do it to reach out to others who could be going through the same thing. Two days before surgery, the crew showed up to begin filming. The day of surgery, they were there with the surgical team and filmed every minute of that day.
At nine months old, my baby girl had a frontal orbital advancement. This was the longest and scariest day ever. Madie had never been put under, and we had no idea what to expect. Ten hours we waited in the waiting room until we saw our baby girl again. Surgery went perfectly. Madie spent the next 5 days in the hospital. A month after surgery, one of Madie’s eyes wasn’t opening much. The doctor had to go back into the same incision to shave bone to fix it. Problem solved and Madie was on her way to recovery.
The past eight years with Madie has been filled with doctor appointments and eye muscle surgeries. Although Madie has these physical abnormalities, we are so blessed that she is perfectly healthy. She just completed the second grade. She takes piano and dance classes. She does well in school. She is outgoing, beautiful, independent, and has amazing strength. We truly could not imagine her to be any other way. We are blessed.
On June 14, Madie will undergo the BIG reconstructive plastic surgery. The surgery that will be performed is called facial bipartition. The surgeons plan to move Madie’s eyes closer together and align both sides of her face. Madie will be in Children’s hospital for 2-3 weeks. The recovery will be a long one.
I wanted to share Madie’s story because we still do not know of anyone else like her. Also, I wanted to raise awareness and to let others know they are not alone.
**If you would like to contact Heather (Madie’s mom) please contact her at