We’ll never forget when the doctor came into our hospital room on Christmas Eve day, only eight hours after our daughter was born, and said, “We’re taking Madison to have her head X-rayed because of the indentation on the left side. It may be a fracture that happened while she was going through the birth canal.”
Both of our hearts sank. We were filled with shock and disbelief. One minute we were so caught up in the joy of bringing this new life into the world and the next minute we were facing an uncertain crisis. The X-rays taken had to be sent to specialists in New York City for more evaluation. Due to the holiday and lighter hospital staff on duty, we were not given a diagnosis of Madison’s condition but were told there was no fracture to the skull and for now, treat her like a normal healthy baby.
The following week we took Madison to see her pediatrician, who suggested that we see a plastic surgeon in Syracuse who specialized in cleft lip and palate along with craniofacial issues. From that moment on, Madison’s young life would be filled with numerous appointments with doctors, including neurosurgeons, plastic surgeons, geneticists, ophthalmologists, orthosurgeons, and not to mention several MRIs, CT scans, IV sedations, blood work, and surgeries.
Going into that first appointment, we saw babies with cleft lip in the waiting room and parents who looked as worried as we were. The doctor gave Madison an official diagnosis of unilateral craniosynostosis, a term that went right over our heads. As he described the details of the operation she faced in just a few short months and all the possibilities that come with surgery of this magnitude, we felt numb. As hard as we tried to listen and understand what the doctor was telling us, we couldn’t retain anything or even believe this could be happening to our new family. It was truly devastating and the worst day of our lives.
After we got home that day, we received a phone call from our friend in Boston who offered to contact the neurosurgical team at Children’s Hospital. The next morning the surgeon himself, Dr. Proctor, called, and we explained all that had been told to us by the plastic surgeon in Syracuse. He said he was clearing a time slot in his schedule the next day for us to bring Madison to see him. We couldn’t believe how fast things were moving and how positive the doctor sounded.
The next day we were there for our appointment. Sure enough, the diagnosis was correct, but the path we were about to take was much different than in Syracuse, where they wanted to perform surgery when Madison turned four months old. Our new team in Boston explained that they would wait until she was approximately eight months old—when the skull is soft enough still to manipulate by hand, yet hard enough to hold. We learned a clinical study showed 30 percent of the children who had this surgery at four months of age or younger had a relapse and had to repeat the surgery.
That day we met most of Madison’s craniofacial team, including nurse Dotty MacDonald, who made us feel much more comfortable and confident in the success of her surgery. The fact that they performed three to four of this type of surgery per week compared to four to five surgeries per year in Syracuse and that families from all over the world brought their children with craniosynostosis to Children’s Hospital Boston put us at ease and made us believe we were making the right decision for our daughter.
We finally felt like we could enjoy life with our baby. We had a great summer trip to Boston; Bar Harbor, Maine; and Nova Scotia that allowed us to take our minds off her surgery and just enjoy our baby girl.
In September 2004, we made our way back to Boston for her surgery. All the anticipation and worry for the last eight and a half months was finally going to be over. Our loving family and friends drove the five-plus hours from upstate New York to be with us. Their love, support, and prayers really got us through that stressful time. Madison’s surgery team consisted of 23 people including doctors, nurses, and medical assistants, and took approximately nine hours. When we finally heard the words, “She did great, and everything went okay,” the relief we felt was indescribable. Each doctor took time to speak with us after her surgery and answer all of our questions.
Immediately afterward, we spoke with the craniofacial team’s ophthalmologist, Dr. Dagi, who explained that Madison had severe strabismus (eye crossing), which is common with children with craniosynostosis, and the next steps she faced. When we returned to Boston for her follow-up appointment, Madison received new glasses, and we got instructions to patch both of her eyes for several months to help correct the strabismus. She has since had three eyemuscle surgeries at ages 15 months, 21 months, and 4 ½ years.
Madison is 8 years old now, still wears glasses, and may possibly need to have one more eye-muscle surgery when she is a teenager. When she is 11 or 12 years old, she will also need dental work for problems caused by craniosynostosis. She has yearly checkups with her “team” in Boston.
Despite all the medical “adventures” she’s faced in her young life, Madison is a healthy, very active 8-year-old girl. She plays hockey, lacrosse, swims, and does karate. Since we’re a huge hockey family and believe in giving back, we connected with the Syracuse Crunch Hockey AHL team to arrange a charity hockey game to benefit the Foundation for Faces of Children. This will be our 7th year participating and helping to raise money and awareness for the Foundation.
Our overall experience with Children’s Hospital Boston’s craniofacial team has been nothing but positive. The expertise and knowledge of the staff and genuine concern for the families who have children with craniofacial issues, in our eyes, is the best you can get. A year after Madison’s surgery, they changed how they did that particular surgery due to updated research and new technology. The resources and information that Children’s Hospital Boston makes available to families through the Foundation for Faces of Children attest to how excellent this organization is. We absolutely made the right choice for our Madison.