Our clubfoot journey!

Our clubfoot journey began back in June 2010 when we found out at our 20 week ultrasound that our little boy would be born with bilateral clubfoot.  I was at work the day after our u/s when my OB office called me.  I knew instantly that something was wrong.  The doctor told me that they noticed something with his feet and that they “thought” that he had clubbed feet.  Of course my world crumbled just thinking  that my “perfect” little boy was not perfect anymore.  I cried on the phone and my OB told me that they wanted me to get a level 2 ultrasound the following day with a maternal fetal medicine doctor to be sure that this was only an isolated problem.  I left work that day in a haze.  I managed to call my husband from my car and all I could get out was “Something is wrong with Knox”.   He met me at home where we began researching EVERYTHING there was to know about clubfoot.  I felt a little better by that evening after doing some research and realizing that this happens to 1:1000 babies and is totally treatable.  I said a little prayer that night to ask God to not give my family more than we could handle.  If my baby boy would be born with clubfoot (or something else at this point) then I would take everything with stride and love him unconditionally no matter what was wrong with him. 

The following day we arrived at the MFM praying that they would tell me that this was a mistake and that he was “perfect” again.  The ultrasound tech was wonderful as she explained everything that she was doing. She started with his brain and worked her way down. Everything looked perfect from his brain, face, arms, heart, genitalia (he was definitely a boy!!), spine, and then we got to his feet.  I knew instantly that they were turned in but I needed to hear it from the tech.  She agreed that they were clubbed and that she would have the MFM doctor give me more information.  She left the room and as we waited for the doctor, I felt somewhat calm.  We had prepared ourselves the night before and it was somewhat of a relief to know that his only problem were that his feet  turned inwards.  The MFM came in and confirmed what I already knew.  She offered to do an amnio to rule out any chromosomal defects but we declined.  Even if our little boy had other issues, we wouldn’t be changing our decision to keep him.  The next few weeks were a rollercoaster.  I would be fine one minute and breakdown the next.  I cried daily to my husband thinking that I did something wrong. 

I immediately got back on the internet to research the “best” doctor in our area.  I wanted to meet the doctor and be sure that he was qualified before the birth.  I researched and found Dr. Kean at Nationwide Children’s Hospital in Columbus (he was the head of the orthopedics group).  We met with the nurse practitioner who explained that our doctor was not Ponseti certified (no doctors are certified in Ohio) but that he practiced the method.  I felt comfortable and prepared after our meeting. 

On September 24, 2010 I went into labor and after 8 hours of labor, Knox was here.  The OB put him on my chest and I immediately checked him over.  I scanned every part of his body to be sure that his feet were the only issue.  He was born at 37 weeks and 3 days weighing 6lbs 14oz and was perfect……….except for crooked little feet.  We were instructed to call the orthopedic office once he was born so that he could be casted within the first week of life.

Knox had his first orthopedic appointment on Thurs. Sept 30, 2010 where Dr. Kean met us and advised that my son’s feet were pretty flexible and that he would be a pretty easy case to correct.  He estimated that he would need 4-5 casts, tenotomy surgery, and then into shoes/bar for 3 mos 23/7 and then naps/bedtime (typical Ponseti protocol).  Knox did great with his casts and we had a little fun decorating them too.  We went back weekly for 4 weeks to get his casts changed.  His feet were definitely straightening out and we were reassured that he was looking good.  Dr. Kean did advise every appt. that his achilles were still tight on both sides and that he would need the tenotomy surgery.  On November 1, 2010 we were scheduled for surgery.  Our doctor does the surgeries in the OR and puts the child under general anesthesia which I was not happy about but I trusted him.  We arrived at the hospital early in the morning on November 1 and they took Knox back around 8am.  They at least made him the first surgery of the day because he was not allowed to nurse after 4am.  By 8, he was getting pretty cranky!  The doctor met me in the recovery room where Knox was doing well (he even got camo casts J).

Dr. Kean let me know that the surgery didn’t go quite as well as they had hoped for.  He said that Knox’s achilles didn’t loosen enough and drop the heel into the correct position.  He told me that we would need to go back into casts for a few more weeks to try to get the heel to drop down.  I was dumbfounded.  This completely threw a wrench in our plan and I didn’t even know what to ask (why this happened or how long would he be in casts?) I immediately got back on the internet and started asking questions on a few clubfoot chat boards. There were a few people that had had this happen but not many.  Knox did well with the tenotomy casts but they started to slip after 2 weeks.  We went back to the doctor to get them changed and to me his foot didn’t look any different than before the surgery.  The next 2 weeks were complete HELL.  Every cast after the tenotomy slipped off. The first week we went back 3 times for new casts and the second week we went back 4 times.  By the second week, we were lucky to keep the casts on for 24 hours before they fell off.  I knew that something was wrong!  I had secretly been researching Dr. Morcuende in Iowa but didn’t know if it was feasible to make a trip from Ohio to Iowa.  On November 29 I was going in to get Knox’s casts changed once again and I noticed that his left foot did not look normal (or as normal as a clubfoot could look). Both of Knox’s feet had become short and chubby with a lateral crease on the bottom and a hyper-extended big toe (classic signs of complex clubfoot).  His left foot had become a rocker bottom foot because the doctor was pulling his toes upwards with a tight achilles.  This caused the bones in his left foot to start to bow.  I told the doctor that I knew that something was wrong and that they would not be putting another cast on my son.  I told them that I was going to go to Iowa for treatment because I knew that they were casting incorrectly.  I left the office crying because I was so mad at myself that I had let my son’s treatment get so bad.  I KNEW that he was being casted incorrectly but I kept trusting the doctor. 

We made an appt with Dr. Morcuende and headed to Iowa four days after our last appt in Columbus.  We flew with Lifeline Pilots (non profit organization that flies children with medical conditions for free) and stayed at the Ronald McDonald House overnight.  On December 3, 2010 we had our first appt in Iowa.  Dr. M confirmed that Knox was casted incorrectly and that he had indeed caused him to become a “complex clubfoot case” and  caused the rocker bottom foot.  He assured me that I did the right thing by bringing Knox to Iowa and that he would get him corrected.  He estimated 4-5 more castings along with another tenotomy surgery.  Dr. Kean did the surgery too early in Columbus when Knox’s foot was not properly corrected which did not achieve the maximum results.  Dr. M assured me that his casts would not slip off……and they didn’t.  Knox would kick and kick and the casts never budged. 

The following week my mom flew with Knox out to Iowa for his cast changes.  His feet were looking very good and doctor was pleased.  He thought that after another week of casting Knox should be ready for his tenotomy.  On Dec. 17, 2010 we flew back to Iowa prepared for the surgery.  Dr. M took one look at him and said that his feet were fully corrected  and that he didn’t need the tenotomy surgery. 

Knox was fitted for his Mitchell’s shoes at that appt and Dr. M told us to keep casts on for 2 more weeks and they would ship the shoes to our home in Ohio.  He said that we could soak off the casts at home and put him in the shoes and that we didn’t have to travel back to Iowa until the end of March.  I teared up and Dr. M hugged me and thanked me for bringing him to Iowa.  I laughed and told him that he was the one that needed the thank you.  He told me that it was moms like me who made a difference in the clubfoot world. At that moment, I knew that this was the reason why God gave me a beautiful little (I mean big…..he was also weighed at that appt and was 15lbs 8oz) boy!  I was given the chance to educate others on this deformity.  I started this journey knowing nothing about clubfoot and have done so much research at this point that I could write a book on it.  I thought the worst when we found out about clubfoot in June but now I find it humbling to educate people who ask about his shoes and our journey.  Knox has been in his shoes with the bar for almost a month and has done wonderful.  He keeps them on for 23 hours a day 7 days a week.  We go back to Iowa in March and will “hopefully” be able to go down to wearing the shoes only at naps and bedtime.  Our journey has been a long rough road not only physically but also emotionally but I look forward to a new chapter in my son’s life of learning to crawl, walk, and run.