Allow me to introduce myself. My name is Bryan. This first post is a tad long because it is my first and I have a lot to write about! :-)
My wife Mary, son Joseph and I live just South of the Bay Area in Northern California.
I am writing this blog not only to therapeutically help myself, but in the hopes that some stray soon-to-be Father/Mother may one day find this of some help or comfort whilst searching the internet for information about their child's diagnosis of "Club Foot." My aim is to periodically share with you here our experience along the way as Jonathan and our family undergo corrective treatment for his case of bilateral club feet. In my own search for questions, I found this type of personal information far more helpful and encouraging than some medical dictionary website.
The doctors first informed us of Jonathan's condition at our 26-week ultrasound. Mary and I went to this regularly scheduled ultrasound to check up on the little guy and in the hopes that we would discover the sex of our newest family addition. -This would be a good time to mention a bit of background information in regards to our family and having children.
Our son Joseph was born on March 12th, 2010. It was a joyous day for our family, I cried like I have never cried before with joy at his arrival. He was beautiful. The moments following that instant were some of the hardest I have yet experienced. The NICU (Neonatal Intensive Care Unit) team was there in advance and ready to receive Joseph. The team of doctors instantly rushed his little body with probes, needles, tubes and lights. I was only able to see him for a few short minutes before he was whisked away upstairs to the NICU. The next 8 weeks were a test of will. We had terrifying ups and downs. Joseph turned blue in my arms several times. Barely able to make physical contact with our newborn son, we lived in a room at the hospital 24x7. We ate at the hospital for nearly every meal. We made lifelong friends with other patients, staff and doctors. In the last nine months, Joseph has gone from 3lb 6oz up to over 18lb! He is as healthy and happy as any other baby. No one can tell any longer that he was ten weeks early. I Love him with all my heart and soul and am grateful for the miracle that is his life.
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| Joseph a few days after birth. 3lb 6oz |
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| Joseph at 9 months. 18+lbs! |
It took us three years of trying to have Joseph. We wanted several children and to find out after only several months of being home from the hospital that Mary was pregnant with Jonathan was delightful news! Our family is growing again!
Needless to say, our last "atypical" experience with childbirth had put us on edge to say the least. This time around, the doctors have us in every few weeks, there are different drugs and preparations being made. They tell us that the likelihood of having a premature birth again climbs very high after it happens once. Every visit to the doctor is done with clenched teeth and a quickened pulse. Is something going to go wrong? How is the baby? How is my wife? Can we do anything to help? Is there some miracle drug we need to be taking? and so on and so on....
We found out his sex! We're having a boy! Two boys!!!
We start to notice that the ultrasound tech is taking a little longer than we are used to. She is focusing a lot of time on his lower body. Taking a lot of pictures.
To be honest at this point I don't clearly remember who told us the news. I'm not sure if it was our doctor or the ultrasound tech.
They informed us that Jonathan has bilateral club feet.
My mind instantly raced to the fact that Joseph was born so early. Did we do something wrong? Did we push our luck by having another child? Was he going to be able to walk? Is he deformed for life? Does this mean that he has some other syndrome or condition? Is there anything else wrong with him? Why is this happening? How can we possibly deal with another serious issue with one of our babies so soon after our recent marathon of suffering and joy?
I'm not going to lie. In the absence of information I was depressed, sad and scared for my little boy. Don't take that the wrong way. I already love my little boy with all my heart, no matter how he is born. Like every other parent in the world, I simply want for Jonathan to have the very best chance at what we consider a "normal" life.
The doctor made several appointments for us. A high-risk pregnancy doctor, another more detailed fetal echo-cardiogram, a genetic counselor.
For the next several days, Google was my friend. I looked up pictures of other children with club feet. I read stories of parents experience through treatment. I read statistics. I learned of something called the "Ponseti Method." I read about the potential surgeries and duration of treatment we would expect.
Around this same time we received word that Jonathan's second trimester screening results showed he is at very low risk for an associated syndrome. I'm starting to feel encouraged now. I'm feeling like it's time to find out as much as we can and be prepared. Time to attack this problem head-on as soon as we can!
Because of the abnormality, they wanted to check his heart to make sure it was healthy.
We had a more detailed ultrasound done almost a week later by a Stanford-affiliated high-risk center near the Monterey Bay. They told us everything looked good to them, but that just to be safe, we should still talk to a genetic counselor and go to Stanford for a detailed fetal echo-cardiogram. We walked next door to the genetic counselor and had a nice talk with her. Honestly, she was nice, but I think it was a waste of time. They ask you questions about your family history (My sister and I coincidentally had less severe issues with our legs and/or feet corrected when we were very young.) They ask you if you smoke....etc. I get the feeling that their real purpose in life is to collect statistics. They asked us to do an amniocentesis to check for the likelihood of something else like Down Syndrome being present. We could not say NO fast enough. Having an amnio increases your risk of having a premature birth and that's the last thing we want! Besides, we will love our child no matter how he is born, the extra tests seem a needless risk.
Off to Stanford weeks later.
A fetal echo-cardiogram is a long study. Each one takes about 1.5 hours. Unless you're "in the business" or are adept at reading tea leaves, most of what you see is a blobby-blurry-jumbled mess! You sit there for that long waiting for them to say something...anything. This first study showed nothing wrong with Jonathan's heart, thank goodness. They asked us to come back in another month so they could capture more clear pictures of the last 5% of the study.
A month later the second study was finished. Good news! Jonathan's heart looks GREAT!
We walk next door at Stanford for our first appointment with the orthopedic surgeon who will be treating Jonathan. Sitting in the waiting room itself was a learning experience for us. We saw lots of healthy-looking babies smiling and playing, all while having casts on their feet and legs. Some had a funny looking bar between their legs, forcing their feet to be angled out.
Meeting the Doctor.
Bi-lateral, means Jonathan has the condition in both feet. The doctors at Stanford are great. They really took the time to answer our questions and concerns. They explained that club foot is one of the most common and treatable deformities. One in every thousand children are born with this. They told us that people like Kristy Yamaguchi, Troy Aikman, Mia Hamm all had club feet!
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| A case of bilateral club foot, courtesy of the Wikipedia Commons library. |
Planned Treatment.
So this is the plan! Within only a day or two of Jonathan being born, we have his first appointment up at Stanford. Apparently they cannot tell the severity of his case until he is born. The plan is to use "serial manipulations" and casting once a week for several months. They basically force his little feet into a corrected position, cast them in place, and then repeat for months. After this he may have to get a minor surgery that cuts the tendon in his heel. At some point soon in his treatment he will have to wear a bar between his legs for 23 hours a day, eventually tapering down to just at bedtime for a few years. They say the babies learn to crawl and walk just fine, they don't know anything different. It's Mary and I who will likely have more mental anguish than Jonathan.
You can view video of the "Ponseti Method" procedure HERE
Whew. I think we're all caught up now! Mary and I are anxious to meet our new son and to get started in helping the young man out as soon as we can in a few months. I'm looking forward to learning more about all of this. At this point we could not feel any more positive and encouraged for Jonathan. We are surrounded by great doctors, family and friends. We're ready for the constant 90-minute treks to Stanford. Keep your fingers crossed! See you soon...
