Our Clubfoot Story - Part 2

Part II: Learning about Clubfoot and choosing a method of treatment

After learning about my son’s diagnosis of clubfoot. I headed to the Internet to collect as much information as I could. I learned that clubfoot is the result of abnormal development of muscles, tendons and bones in the foot while the fetus is forming during pregnancy. Researchers do not know what causes clubfoot, but they do know that it is twice as common in boys and occurs in both feet about 50% of the time. Clubfoot occurs in about 1 in 1000 lives births in the US.

After reading about the statistics and what clubfoot was, my next step was to learn how it is treated. Through my research I learned that there are a few different methods that doctors use for correcting clubfoot. The method that we decided that we wanted to use was the Ponseti Method. The Ponseti method is a non-invasive method that uses manipulation and casting right after birth followed up by the use of special shoes and a bar to correct the malformation. This treatment was developed by a physician in Iowa, Dr. Ignacio Ponseti, over 50 years ago. The treatment begins shortly after birth (within 5-7 days) and consists of manual manipulations followed by plaster casting. The plaster casts are then changed every 5-7 days and the deformity is usually corrected with 5-7 plaster cast changes. (The initial casting can take up to 7 weeks.) Following the casting the child then wears special shoes that are made of high-top open toes with a bar connecting the two shoes with the feet placed at 70 degree outward rotation. The baby will wear these shoes full-time for 3 months and then at night for the next 2-4 years.

Once my husband and I decided on the treatment plan that we wanted we then needed to choose a physician. There are only a few pediatric orthopaedic surgeons here in Arizona that use the Ponseti method and only two in the Phoenix area, so we interviewed both doctors to see which one we wanted. Upon meeting the surgeon that we chose, we knew immediately that he was the one for us. He explained his method, talked a little bit about his background and most importantly made us feel at ease. He was reassuring and calming…which was just what we needed.

While dealing with all of this, the rest of my pregnancy was relatively easy. I worked up until my due date while not missing any days of work and my biggest complaints were that I had horrendous heartburn and my little boy didn’t let me sleep much at night!

Because of the diagnosis we were scheduled to see a perinatologist at least every 4 weeks with each appointment always including a very in-depth 3D ultrasound…I was lucky because I felt like I knew exactly what he would look like when I would finally get to hold him. I knew that he had my nose and my cheeks…he was adorable!

I really am so very thankful that my the rest of my pregnancy was uneventful…I was really on an emotional rollercoaster dealing with all of the extra appointments that we had and learning about the birth defect…I don’t think that I could have handled much more. And I am also so very, very glad for the technology that we have…it is so amazing that the doctors are able to determine that a child has a birth defect while in-utero, so that my husband and I were able to plan for what was to come and we didn’t have any surprises on the day that he arrived!

To Be Continued...

Did you miss part 1? Click here to see it...

Our Clubfoot Story - Part 1

Clubfoot definition - A congenital deformity of the foot usually marked by a curled shape or twisted position of the ankle and heel and toes.

I haven’t talked much about the fact that my son with born with severe bi-lateral clubfoot, but I know that I probably should. I believe that by telling our story, from learning about the birth defect when I was only 20 weeks along in my pregnancy and all the way through his treatment, can help other parents to know that they are not alone. Because you are not...there are others that have been through the same things...and we made it. It was tough, but we made it!

How our story went…

In the beginning:

I found out that I was pregnant in April of 2006. My husband and I were so happy. We had been married for 6 years at the time and were finally ready to start our family. We had long ago determined that we were only going to have one child. We didn’t care about the sex of the baby…we just knew that being parents was something that we wanted to be and healthy was all that we were hoping for.

Everything went great in the beginning of my pregnancy. I was one of the lucky few women that never had morning sickness. I was able to sleep each night, go to work each morning and other than gaining weight…there really was no change for me. We went to our first doctor’s appointment at 12 weeks. Listened to the baby’s heartbeat and cried. Cried tears of absolutely happiness. We went back to the doctor at 16 weeks and again at 20 weeks. Note that my husband and I went a different route with our doctor…most women choose to go to a ob/gyn, but our family doctor can deliver babies and we LOVE her, so we opted to have her take care of me during my pregnancy. And because of this when it was time for me to get an ultrasound, I was sent to a clinic that specializes in ultrasounds instead of having it done in my doctors office.

The day of the ultrasound my husband and I were on pins and needles with excitement. We couldn’t wait to finally “see” our baby and find out if we were having a boy or a girl! We met up at the clinic and waited in the lobby for our appointment, holding hands & giggling like children. We were called back and the technician began our ultrasound. She walked us through what we were looking at…the heartbeat, the spine, the kidneys, etc. She then told us that we were having a boy!

But I started to notice that she wasn’t showing us anything on the bottom half of my baby’s body. I found myself asking her over and over, “Everything’s just perfect, right?” And with each question all that I got was either no response or she just started talking about something else. Then came the dreaded words from her. She told us that she believed something might be wrong but that she needed to get a second opinion from the physician, a world-renowned perinatologist that owned the clinic. The technician wouldn’t tell us what was wrong…she just left the room. Turns out that the physician that she consulted with was working that day at one of his other clinics and that he could look at our ultrasound from there. My husband and I silently sat in the exam room crying. Both of us were crying because we had no idea what was going on…

When the technician came back into the room she informed us that the perinatologist wanted to talk to us, so she picked up a phone in the exam room and handed it to me. The doctor then informed me that our baby had a birth defect called severe bi-lateral clubfeet. I don’t remember much more from the conversation…he went over statistics, and treatments and other stuff, but I pretty much just kept hearing “birth defect” over and over and over. I handed the phone back to the technician and told my husband what the doctor had told me. And we both cried. I remember the technician telling us that it would be ok and she also went over the statistics of how many babies are born with it, how it is treatable and other stuff. But I didn’t really hear her. I was in a daze. Next thing I knew we were back in the lobby making follow up appointments, being given literature and getting a printout of some photos from the ultrasound along with a disk of the images.

An ultrasound image showing one of my son's clubfeet.

I was just at such a loss…I had never imagined that the appointment would turn out how it did. I just thought we would go in and find out the sex of our baby…I imagined I would shed tears, but tears of joy not of sorrow and uncertainty. I didn’t know anything about clubfeet other than a few photos that I had seen of children in third world countries. I wasn’t something that I was familiar with…no one in my family or my husband’s family had had this, all of my friends had healthy babies. All that I could picture was that my baby boy wouldn’t walk or that he would have to have multiple painful surgeries.

That night I called my doctor, talked to my family & close friends, cried with my husband & started to research exactly what clubfoot was and how it was treated. I was scared and sad but I knew that I needed more information…

To be continued...