My 1 in 1,000

By Guest Blogger Dana Harrell

April 10, 2013 is a date I will forever remember. It was a gorgeous day and the day my family was going to find out the sex of our baby! As I lay on the table watching the video monitor, my 5 year old daughter and husband stand behind me, waiting with anticipation. I saw it and screamed out before the ultrasound technician had a chance to say it was a boy.  While we were rejoicing, I noticed technician moving the wand more carefully around my stomach and looking concerned as she stared at the femur and foot.  She started with the positives of course…nice strong heartbeat, organs look healthy, his measurements were good, his spine was straight, etc. Then came the bad news. She showed us his right foot and said it looks like he has a clubfoot but the doctor will have to come in and confirm it. What she said after that, I truly don’t remember.

The doctor confirmed my baby boy would indeed have a unilateral clubfoot. They wanted me to come back around the 6 month mark to have a level II ultrasound to make sure there were no other abnormalities. The next few months were a whirlwind of information coming our way. Doctors, casting, braces, and surgery oh my! Approximately every 1 in 1,000 babies born are diagnosed with clubfoot. For some reason, it is more common among boys and either one foot or both feet can be affected. I spent hours and hours researching causes, treatments, other known defects associated with clubfoot. We were heartbroken. I felt like it was my fault. Had I done something wrong? Could I have done something differently? As a parent, all we want is to protect our children and this is something I couldn’t help or change for him. I felt like a failure. Unfortunately, doctors still aren’t sure what causes clubfoot when no other abnormalities are present. It is an unknown combination of situational and environmental factors. We told our closest family and friends about the situation but even they didn’t really understand what we were going through. I found most people either dismissed it as nothing or it was the worst thing ever. Meanwhile, my husband and I were stuck somewhere in the middle of all that.

Our pediatrician recommended the closest Pediatric Orthopedic Specialist which was about 45 minutes away from us. She had trained with Dr. Ignacio Ponseti on non-invasive clubfoot treatment which seemed like the best option for us. If this treatment did not work, we would need to find an Orthopedic Surgeon. Our baby received his first plaster cast at 10 days old. I can’t describe exactly how heartbreaking it is to see a cast on your 10 day old baby or to watch the process as they put it on with him crying the whole time.

I think for me, the worst thing about having such a small baby with a cast, was actually the stares and comments from complete strangers. I can’t tell you how many times we were asked “how did such a small baby break his leg?”  People would just glare at me and make comments under their breath. The first few times I tried explaining that he had a clubfoot but after that I would just say he didn’t and leave it. These people don’t know me, so they automatically assume I hurt my baby. That is the WORST feeling.

Our treatment plan was for him to receive a plaster cast that will manipulate the foot to its correct position every week for 5 weeks. After the 5th cast, he received a small surgery called a Tenotomy which was done right there in the office. They made a small incision and clipped his Achilles tendon to allow the foot and leg muscles to stretch and move further into a correct position.  He received two more plaster casts after that that allowed the incision to heal.

As soon as the last cast came off, he was fitted for special orthotics that has a bar attached to the bottom of the shoes, also known as Boots and Bar (bnb).

BNB keeps his foot in the correct position to reduce the risk of relapse. He had bnb wear for 23hrs per day, 7 days a week until he was 9 months old. At that point, he began crawling and trying to stand up so we reduced our time to naps and nighttime totaling 12 hours a day.

During the early stages of this process, there were many sleepless nights. There were many tears of self-pity and frustration. But we got through it stronger and I know this was the best option for him. My baby boy has just turned 4 years old but we will continue treatment until May of next year.

If you are a mom/ dad/guardian of a baby with clubfoot: You rock. It is NOT your fault. You are stronger than you think. You CAN do this. I promise it will get easier in time.

 


3 thoughts on “My 1 in 1,000

  1. Emily Gregg

    Thank you for sharing!! My daughter was born with cutis aplasa and a sacral dimple. We were devastated as words like spina bifada were tossed around. I drove myself insane with Google. We suffered through a spinal ultrasound at 6 weeks and an MRI at 6mo but we got great results at both. Looks like she’s going to be normally developing but those were the darkest of days.

    Reply

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