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, 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”. My husband and I looked at each other and exchanged a knowing “Ohhhhh”. My husband 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 all bundled up I was so focused on nursing and didn’t think about these birth differences. Once settled into our hospital room I un-swaddled my baby and saw the clubfoot severity. The baby’s feet were both turned right up the inside of both legs and three fingers on the left hand were joined together and tiny which was, we later learned, caused by Amniotic Band Syndrome (ABS).
FAMILY HISTORY:
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 corrected without surgery. While there is a genetic component to clubfeet, amniotic band syndrome is not genetic and has a high correlation with clubfeet. Our second baby did not have clubfoot or ABS.
CLUBFOOT SERIAL CASTING:
The next morning the Doctor beganserial 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. Despite it all, our baby was very happy.
The problem we later learned was that the casting wasn’t done correctly. The casts were not full leg casts. By six months of age babies learn to flex the foot in these small casts, breaking it and kicking it right off. Leaving casts off for any period of time, even overnight, is not advised.
THE HAND SURGERIES:
Clubfoot surgery was delayed slightly because of plastic surgery to separate fingers on the left hand. Amniotic Band Syndrome caused the pinky finger, ring finger and middle finger of the left hand to not fully develop, fingers at birth were webbed together, smaller than normal and missing some joints.
There were two hand surgeries, 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 there were no major arteries in the ring finger — the next 24 hrs were crucial. When the nurse came in at midnight to check, blood was flowing to that finger!
Our child has independent use of all fingers and plays the piano and guitar.
CLUBFOOT SURGERIES:
On October 18th, 1993 one foot was operated on and seven days later, on October 25, the other foot was operated on. On January 3, 1994, the casts came off! Some children crawl with casts on but our little one didn’t begin crawling until after the casting. First steps were taken on August 11th, 1994.
When the post-surgery casts came off we were referred to the Orthotics department of the Hospital for Sick Children. Custom made Ankle Foot Orthoses (AFO’s) were made. We were also given a set of exercises to try to improve flexiblity and aid the healing of the scars.
FEET TODAY: (photo at age 8)
It’s common to have some regression after surgery. You can see from the photo and exray the underdeveloped calf muscles and toeing in, feet are different shoe sizes and there is leg length discrepancy.
Fitting shoes has been an ongoing challenge. We have now found a local Pedorthist who has been able to provide custom orthotics and modify shoes.
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.
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 ??