Melissa, Jacob (middle) and the other "Ponseti Babies" being treated at the same time and staying at the Ronald McDonald House in 2008
Jacob was born in August of 2008, our fourth child. I still remember the pain and confusion of those moments when the nurses and doctor were examining him and I knew that something was wrong. When you are faced with the unexpected and the unknown, when it is your precious child – it is scary. The pediatrician came in later and explained that Jacob was born with a clubfoot. She mentioned surgery and said she had made an appointment with an orthopaedic surgeon for us. Then she just left. I sat there feeling hopeless and confused as I looked at my son who was only a few hours old. He was so tiny and helpless and the thought of surgery pained us terribly. It was that pain that propelled us to get on the internet and start searching for answers. We learned about clubfoot and all the possible treatments and one name kept coming up over and over – Ponseti. The Ponseti Method to us meant hope.
We found a doctor in our state (Arizona) who had been trained in the Ponseti Method and started treatment with Jacob. He examined Jacob briefly and then turned us over to his nurse practitioner who did Jacob’s cast every week.* We were hopeful, but after a few casts we realized that something was not right. The shape of Jacob’s foot did not match the photos we had seen in all of our research (we had even borrowed a copy of Ponseti’s book to read). Finally, one of the casts slipped and had to be removed immediately, where we discovered his big toe was red and swollen. At our appointment the next day the doctor suggested we needed to “take a break” from casting.
Deep down we just knew something was not right and in a leap of faith I looked up Dr. Ponseti’s email address at the University of Iowa and sent him an email explaining what we had already gone through and many photos of Jacob’s foot and progression. Within a couple of days we received an email from Dr. Ponseti in reply. He told us that Jacob had an atypical clubfoot and from the photos we sent the casts were not being done correctly – the casts covered too much of Jacob’s toes and stopped half way up his thigh. Dr. Ponseti suggested it would be best if we brought Jacob to the clinic in Iowa. We were devastated by the news but also felt enormous gratitude for Dr. Ponseti, who did not even know us, yet took the time to look at our son’s case and once again offer us hope.
It was very hard to leave my other three young children and get on a plane with my then 2 month old son, but we knew that we were doing what was best for Jacob. I will always remember our first appointment at the clinic in Iowa. There was a quilt hanging on the wall with the footprints of many children Dr. Ponseti had helped - perfect footprints. Dr. Ponseti spent so much time with us that first appointment, asking questions, examining Jacob’s foot, and discussing the treatment with the medical staff. It was the first time we felt like Jacob meant as much to the doctors we were placing our faith in as he did to us. Dr. Ponseti put on Jacob’s first cast in Iowa and he or Dr. Morcuende did each successive cast. Once, as Dr. Ponseti finished putting a cast on Jacob, he turned to me and asked “Does this cast rotation look much different than the one we just took off?” I told him it looked the exact same as the last one to me and Dr. Ponseti started unrolling the cast as he said to the interns watching him, “The mothers always know. They watch their children’s feet so closely. The mothers always know.”
Jacob had six casts at the Iowa clinic and a tenotomy performed by Dr. Morcuende. I took Jacob home and three weeks later when we removed the last cast, Jacob had a perfect little foot. All along we had prayed for a miracle for Jacob and we know that the clinic in Iowa and the work pioneered by Dr. Ponseti were our miracle. While I was in Iowa I stayed at the Ronald McDonald House where I met parents from all over the world - New Zealand, Mexico, Canada, Italy - who brought their children to Dr. Ponseti for the same miracle as us. Some of us have kept in touch and we rejoiced with each other as our children learned to walk and we consoled each other when we learned of Dr. Ponseti passing away.
Jacob is almost 4 now - he still wears his brace to bed every night and will continue to do so until he is about 5 years old. We return each spring to Iowa for his check-ups with Dr. Morcuende and the wonderful staff there. His treatment continues to be a success. Jacob is a walking, running, jumping testament to Ponseti method.
*It turned out that in the first attempt at treatment, the nurse practitioner who was actually doing the casts had never been formally trained in the Ponseti method. Our experiences with Jacob brought to our attention several things:
- It is incredibly important for the method to be applied correctly for it to be effective. That is why we feel so strongly about the mission of Ponseti International to provide proper training for doctors and nurses all over the world. Additionally, we feel very blessed that the Iowa clinic is just a couple of hours by plane away from us. For many parents in our same situation it is not financially or logistically feasible for them to come to Iowa - Ponseti International vital for those families.
- While the Ponseti Method is gaining momentum, there is still a long way to go. When Jacob was born, neither the obstetrician nor the pediatrician mentioned Ponseti to us. Surgery was the principle option presented to us. After talking to parents at the Ronald McDonald House, I found that we all shared a common story of having to find the Ponseti method through our own research. We are interested in how we can help spread information about the Ponseti Method so that for hospitals, obstetricians, and pediatricians, it is the first and foremost treatment recommended to parents.
Jacob playing soccer in 2011, 3 years old.