Rose was born January 30, 1999 at 8:23 p.m. She weighed 6 pounds 10 ounces, and
she was 19 inches long. When I (Joy) was handed my precious little bundle, I
noticed that her left foot didn't look right and mentioned it to the nurses. I
was told it was no big deal and a doctor would come and see it in the morning. I
prayed about it, but I was so absorbed in what a miracle she was that I didn't
dwell on it. The next day the doctor diagnosed Rose as having a clubfoot. My
husband (Neil) and I were assured that castings by the on-call orthopedic doctor
who diagnosed her foot would probably fix it, and if not, we would be referred to
a pediatric orthopedic doctor when she was two months of age to see if she would
need surgery or not. Well, it ends up being a long story, and I wish I had had more information and known more about options from
the start!! Here is Rose's story:
With each diaper change, we had been giving Rose's left foot manipulations and stretches that the orthopedic showed us.
Rose received five short, below the knee casts from her on-call orthopedic doctor. We found out later from her pediatric orthopedic doctor and Dr. Ponseti (you'll find out more about them later on) that these casts were done incorrectly. We should have been clued in that the ortho wasn't our best option when he told us that he'd only treated 6 clubfeet. At the time we didn't realize that he wasn't our only option, and we trusted that he knew what he was doing. Both of these doctors agreed that above the knee casts work better because they held the correction.
Rose was (is) a very vocal child at her doctor visits. I cried the first time, too. She also did several very messy diapers at visits! She let them know how she felt about it all, I guess!
Rose went to see the pediatric orthopedic doctor at 2.5 months. He wasn't pleased with the progress of her foot. He told us that he felt she would need surgery, but we would continue casting.
This doctor made her casts out of fiberglass, and they went to mid-thigh. With her plaster casts we had to soak and peel (which was very messy and upsetting to Rose... and me!) With the fiberglass, we were able to peel it off, and it took five minutes max. I must say that we liked that procedure much better!
Well, we continued to go to her ped ortho (Dr. J.) and alternate with the original ortho (Dr. L.). We continued to see no progress, so a surgery date with Dr. J. was made for August 26, 1999. 1 was feeling very unhappy with Rose's treatment so far. It just didn't make sense to me why we didn't see the ped ortho in the first place (I did recently write and ask him, but he didn't answer that question). I started searching for as much information as I could find on the internet, and I found support groups, links, and information about a Dr. Ponseti.
On July 28, 1999, 1 called Dr. Ignacio Ponseti at the University of Iowa Hospitals and Clinics in Iowa City, Iowa. I spoke to him directly, which to me was very impressive. I apprised him of Rose's treatment.
Rose was six months old at the time I called Dr. Ponseti. He likes to start treatment when the babies are newborns, but I had been encouraged by others to check him out and see if he would treat Rose. Dr. Ponseti said it sounded like she would have a 50/50 chance of correction, and he would know more if he saw her. He asked me if I could be there that Friday!! That was impossible, so we set the date for the following Wednesday, August 4, 1999. Imagine my husband's surprise when I told him we were taking a trip to Iowa that next week!! We live in Wisconsin, so it ends up being a 7-8 hour drive to Iowa City. It has been so worth it!!
Dr. Ponseti has a different method of manipulation and casting that results in a rate of only 5% of his patients needing major surgery. When Dr. Ponseti applied this manipulation to Rose's foot, we were amazed at the results. We had never seen that much correction on her foot! A plaster cast was applied from toe to groin. It looked very awkward because it was so big and her foot was turned out more than we had ever seen it.
A week later on August 11, 1999, my parents and I took Rose for her second cast change. This was the first time Rose had her cast cut off! She wasn't too bad. and it sure was fast!
Well, when Dr. Ponseti saw her foot, he was extremely pleased at how much it had corrected. He suggested that he could perform the heel cord tenotomy that day. A heel cord tenotomy is a minor surgery that can be done in the office and it takes 10-15 minutes. We gave her Babies Tylenol, and they numbed the foot with a local anesthetic.
What the procedure entails is a small (1/4 inch) scalpel that was used to cut her Achilles tendon in order to bring her heel down. On an adult this would be a more serious procedure. With a baby under a year, the Achilles tendon repairs itself! I was not in the room for this procedure, yet I was calm and felt confident that Rose was in good and experienced hands. She's had lots of prayer, and I know God has touched our lives through her and taught me a whole new level of faith.
Rose was casted in another large plaster cast. The foot turned out so far that it looked almost painful. The first couple of nights and days were rough, but we made it through! This cast remained on for three weeks.
On September 1, 1999, Neil and I took Rose to get her last cast off. This time when they cut the cast off, it was a lot of crying. Very sad. Boy, what a beautiful foot!! It was puffy and red, but it was straight!
Rose wears a brace that is a pair of shoes with a bar between them. She wore the brace from September 1 to December 1 all day everyday except for baths or change of clothes. She now is wearing the brace less and soon will only wear it for nap/bedtime. When she has the brace off she gets to wear real shoes! At 10 months of age, I have put her in her first pair of real shoes! She is now almost eleven months and walking around furniture.
We took Rose to see Dr. Ponseti on October 25, 1999, to make sure that all was progressing well. He said her foot looked excellent! A local news station was filming Dr. Ponseti to get word out about him and his method, and Rose was filmed as one of his successful patients! We will return to Iowa in January to keep an eye on progress. We hope you enjoyed Rose's story!
Joy and Neil Shipley
