Congenital Talipes Equinovarus

Our Clubfoot Story

BIRTH – January 1993

I had wanted to get pregnant for a few years and had been on fertility medication prior to conceiving. I was very sick throughout the pregnancy but extremely happy. I would dance (as well as my bulging body would allow) and sing “Whoa-oa-oa! I feel good, do-be-do-be-do-do, I knew that I would, now….So good, so good, I got you.” Although I read the “What to Expect…” series and we went to pre-natal classes we weren’t prepared – I didn’t even have my bag packed!

I had a very easy labour. The doctor raced me through the hospital in a wheelchair and called out “No time to register her, this baby’s coming now!” A short while later the doctor examined our new baby. The Dr. calmly said that there was a little webbing between some of the baby’s fingers that a plastic surgeon would need to “snip” and that both feet turned in a “bit”. Steve and I looked at each other and exchanged a knowing “Ohhhhh”. Steve explained that his two nephews were born with mild clubfoot and his Mom’s foot turned in slightly causing her to limp. We hadn’t even thought about this genetic-link during the pregnancy.

When the baby was given to me to nurse he was all bundled up and I don’t think I even looked at his hand or feet. I was so focused on nursing. Once settled into our hospital room I un-swaddled my baby and saw the severity of his clubfeet and hand difference. The baby’s feet were both turned right up the inside of his legs and three fingers on his left hand were joined together and tiny which was, we later learned, caused by Amniotic Band Syndrome (ABS).

FAMILY HISTORY:

Evan kicked off cast

Pictured here with one cast on and one cast off (July 1993) after 6 months of serial casting note how turned in the feet still are.

His Paternal Grandmother had one foot that turned slightly and she walked with a limp. This was not recognized as something that needed treatment, she was simply instructed to “walk straight.” Two cousins (on Dad’s side) were both born with a mild clubfoot that was easily corrected without surgery. We aren’t sure if his clubfeet are genetic or not as amniotic band syndrome is not genetic and has a correlation with clubfeet. Our second baby did not have clubfoot or ABS.

CLUBFOOT SERIAL CASTING:

The next morning Dr. Faulkner of the North York General started the serial plaster casting. Casts were changed weekly, then bi-weekly, then monthly. The plaster casts had to be soaked in water and removed prior to the plaster clinic appointment. This was a frustrating and exhausting experience for new parents (especially when the baby soiled the bath water two or three times while you are soaking them off!) Evan was a very happy baby despite it all. By the time he was six months old Evan was able to flex his foot in the cast and then kick the cast right off. This meant that we had to drive him back across the city to the hospital to have it replaced. Evan’s casts were below the knee. It is now known that a better result can be achieved by full leg casts

THE HAND SURGERIES:

Evan’s surgery for clubfoot was delayed slightly because he first had plastic surgery on his hand. In Evan’s case, Amniotic Band Syndrome affected his left hand the pinky finger, ring finger and middle finger were webbed together, smaller than normal and missing some joints.

Evan had two surgeries for his hand the first on August 12, 1993 and the second on July 29, 1996 by Dr. Howard Clarke at the Hospital for Sick Children.

The second hand surgery was very hard on us. We were used to the routine and we thought it was going to be the easiest of the surgeries (at least on us). However, we started to worry when the surgery took two hours longer than expected. This operation was to separate the index and ring fingers. The ring finger had already been separated from the pinky finger and now we discovered that Evan had no major arteries in the ring finger and he might lose it — the next 24 hrs were crucial. I remember around 11:30 p.m. that night praying over Evan in the hospital room. After a while, I checked Evan’s hand but I didn’t trust my own judgement, so it wasn’t until the nurse came in at 12:00 that I knew that our prayers had been answered — blood was flowing to that finger.

Evan has independent use of his fingers and plays the piano and guitar (left handed).

CLUBFOOT SURGERIES:

On October 18th, 1993 one foot was operated on and seven days later, on October 25, the other foot was operated on. Following the surgery, Evan had plaster casts and then on January 3, 1994, just prior to his 1st birthday, the casts came off! What a joy it was to bathe Evan without worrying about casts!! After the casts were off Evan began crawling.

When the post-surgery casts came off Evan was referred to the Orthotics department of the Hospital for Sick Children. Custom made Ankle Foot Orthoses (AFO’s) were made for him. We were also given a set of exercises to try to keep his feet flexible and aid the healing of the scars.

On May 13, 1994, when Evan was sixteen months old, his brother was born. Elliot doesn’t have clubfeet or amniotic band syndrome.

On August 11th, 1994 Evan took his first steps on his own.

HERNIA:

As if four surgeries, and far too many casts to count, weren’t enough, the week before Evan started Kindergarten he was operated on for a hernia. The only problem with this was that Evan was a seasoned pro and didn’t think he wanted to go through the doors into the operating room. But he didn’t make a fuss and after thinking about it for awhile he passed on the wagon ride and walked in on his own. Therefore before the age of 5, Evan had 5 operations.

Evan is self-confident. He experienced some school-yard teasing such as, “you run funny”, but Evan replied in a strong assured voice, that it’s a good thing that he can run at all. From the beginning, Evan’s Dad and I always explained to people about his hand and feet. We believe that people are more accepting if they understand and aren’t made to feel embarrassed about asking.

clubfeet

Under developed cafe muscles

EVAN’S FEET TODAY: (photo at age 8 – now 25)

Evan has underdeveloped calf muscles, toeing in, his heels are slightly rotated, he has loose ligaments so his knees are double-jointed and some days with pain and morning stiffness. He rolls over on the side of his right foot when he steps. He has a one-inch leg length discrepancy – one shoe needs modifications to compensate for this.

xray of Evan’s feet February 2007


REFLECTIONS OF THE SURGERIES:

The stress of having your baby face surgery is hard to describe. The Surgeries were all hard on us, each for different reasons:

  • The first hand surgery at Sick Kids – I was “a mess” according to Evan’s Dad. For one thing, I was nursing and it was so hard to not feed my crying baby when my breasts were engorged. He was so little and had never been away from me for so long.
  • Just prior to Evan’s first clubfoot surgery my breast milk started to dry up as I was pregnant with Elliot. When the surgery was over they told me to try nursing him anyway but Evan pushed me away and would only go to Daddy. I had to fight with the nurses at North York General to bring me a cot during the day. We shared a room with a newborn jaundice baby. That night Evan stayed wide awake and I was an exhausted pregnant Mom.
  • The second hand surgery was very hard on us as Evan nearly lost his finger
  • The Hernia seemed like such a small thing after all the other things Evan (and his parents) had been through but he was older so it was all a lot harder on him. It was done as day surgery and he would have been better off if we had stayed overnight. He was sick in the car on the way home and we felt we had rushed away before he was ready to be moved. This is the surgery he remembers. Evan talks about a yellow cloud when they were putting him under anesthetic.


ADJUSTMENTS:

The reality is that there are some things Evan has to do differently or doesn’t do because of his feet and hand.

  • He plays a left-handed guitar so that his little fingers don’t have to do the cording (as he did naturally on a toy guitar when he was younger)
  • His piano teacher had to modify some fingering patterns
  • The Toronto Public Health Unit supplied an Occupational Therapist to work with Evan at school for a number of weeks to teach him how to type and modify keystrokes – He is now very fast!
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2 comments on “Our Clubfoot Story
  1. Daniel l. Perales says:

    I also went through basically the same steps. Today I feel pain all over my body. My body feels weak all day long. Even if I eat three meals. I wish I knew what at the core of my pain. Thank you for sharing your story. Maybe someday research will find a way to help us all with our disability. Stay focus and positive.

  2. Jenia Paquin says:

    Thank you for sharing your story .My son is 10 years old he was born with a club foot he has in his left leg. The year he was born they start using Ponseti method at Sick Kids . It was all good till about he was 7 years old . I start seen his foot starting going back to the original way .We had to go back to casting . He has to sleep in a brace .
    He is an. active child .He loves to swim he didn’t like to play hockey . He will have to have another cast again It is looks like his foot is going back to original position,It is look like always a battle.I am not sure about Ponseti method. it wasn’t supposed to be required problem . I see a lot of kids coming back to sick kids with the same problem as us .I am not sure if surgery better then Ponseti What advise could you give to him for someone growing up with club foot .What sports is easier and better for him ? He loves to swim and always been better swimmer then runner . Is it because of his club foot .What the best shoes for him to wear ? I just started to wonder if the surgery would of been better for him ??

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