My son, Merritt, was born with a left clubbed foot and congenital shortening of his left leg. Our journey in understanding his conditions and in seeking the best possible treatments has definitely had its ups and downs. This blog is my way of sharing our experiences. It is my hope that similarly situated parents may use information on this page as a resource and as inspiration. Thank you for visiting!

Tuesday, January 26, 2010

Leg Lenth Discrepancy...UGH!

As many of you know, Merritt wore a cast on his entire left leg for the first few months of his life. Practically, this meant that I only actually saw his little leg for a couple hours each week during his cast changes. Well, at one of these cast changes I noticed his left leg seemed to be shorter. After alerting the doctor, Merritt was forced to endure manipulations, stretches, and finally x-rays which confirmed what I had feared most from day one... there is more wrong.

Merritt was diagnosed that day with Fibular Hemimelia. A condition that Merritt's doctor explained, was not my fault. How could it not be my fault? I made this little man... I screwed him up... all of these thoughts whirled through my mind. I know I shouldn't feel that way, but I would be lying if I said that I still didn't believe it to be true.

The doctor explained further that Merritt's leg will always be proportionately shorter than his right leg and that this most likely caused his clubfoot. He went on to say that most of the children born with Merritt's condition have four toes, at the most, and we should feel "lucky" because Merritt has all five. Yeah, that's what I felt... lucky.

Treatment... nothing we could do then. Just wait and see. Wait and see how much of a discrepancy Merritt would have. At that point, the little guy was just too little to properly predict. But, the doctor gave his best guess, which was about 2 inches at skeletal maturity. 2 inches would require one leg lengthening.

But what happens if there is going to be more of a difference? How is a leg lengthened? I needed answers.

As soon as we made it home I started the internet research. I joined blogs and emailed doctors around the country. I actually emailed Dr. Dror Paley at 2:30 am and he called me back at 7:15am that morning!

At the time, Dr. Paley was practicing in Baltimore at the time, but informed me that he was considering moving his practice to Saint Mary's Hospital in West Palm Beach.... 45 minutes from our home!!!! Seriously???? YES!!!!! If there was ever a time to thank God... I think I found it.

Long story short, we made an appointment to see the good doctor. More on that later! Now, my time is up and I have to STUDY! (Yup, studying for the Florida Bar and taking it Feb 23 and 24. ahhhh!) :)

Thursday, January 21, 2010


The above photo is of Merritt's FIRST DAY in his brace... an exciting and challenging time!

I feel like I could write an entire book on boots and bars! I did so much research, emailed doctors, moms, dads... needless to say I became a little obsessed. I guess it was my way of controlling some portion of my son's situation.

After all the research, I decided that I NEEDED to get Merritt in a Dobb's brace and Mitchell Sandals. For more information on these items, just click!

While our physician regularly proscribed the Mitchel Sandals, I was the first in my doctor's practice to use the Dobb's brace. In fact, I had to convince the man that the brace was worth trying. Fortunately, it all worked out and Merritt was in his Dobbs brace and Mitchell Sandals as soon as his last cast was removed.

Of course, we went through the normal h*ll of starting bracing. Merritt wasn't accustomed to having both of his feet on "lock down." But, after about a week, he was well adjusted and everything has been smooth ever since! He even began crawling at about 81/2 months... a day that I was so looking forward to :)

Diapering a casted baby

So, here is one of the best tips I can give to a caregiver of a casted baby... DOUBLE DIAPER!

Before we started double diapering we had a leakage incident... oh man. That poop leaked right into his cast and the cast just soaked it up! So gross, I know, but I have to share in order to make my point. I went to get Merritt's cast changed the very next day - the earliest appointment I could arrange. He already had a little rash on his leg! It happens so quickly.

From then on, we double diapered. Basically, put on the first diaper and then a second. MAKE SURE the edges of the second diaper are on the outside of the first - offering an extra layer of protection. At some point, I started using a size larger on the outer diaper. You don't have to throw away the outer diaper every time you change the baby. Just if it gets leaked onto... which will happen!

Bath time

My favorite part of going to the doctor to get a new cast, was being able to bathe my baby boy. I had no shame, I walked right into that doctor's office with my baby bathtub in hand. I didn't care how much stuff I had to carry... diaper bag, breast pump, lunch for my toddler, whatever... I was bringing that tub!

Merritt's first bath was given in the doctor's office :)

TIP: Your baby's legs will be very sensitive from being in the casts. I used very gentle soap with no fragrance and a super soft washcloth. I never applied any lotions to his leg. What to bring to the visit: tub, two bath towels (just in case of a little squirt!), baby soap, washcloth, and 2 clean changes of clothes (sometimes putting the cast on can get really goopy.)

Doctors, doctors, doctors

First things first... we needed a doctor. After much internet research we figured out that Merritt needed Ponseti treatment for his clubbed foot. (Oh, forgot to mention this in my last post. We were unaware of Merritt's short leg until he was about 4 weeks old. At this point, we thought we were dealing with a clubbed foot only.)

(For more information on Ponseti clubfoot treatment, please visit the official website for the Ponseti International Association.)

We found a pediatric orthopedic surgeon through our insurance company. Went to her. She told us that she followed Ponseti protocol. Merritt was put into his first cast at that visit. He was less than one week old and had a cast from the tip of his toes all the way up to the very top of his leg. It was awful. I cried and cried and cried. Then, I would calm down a bit, until it was time to change his diaper or give him a sponge bath, and I would cry some more. It was just terrible. I hated seeing my precious newborn in a cast.

Each week, I would make the 2 hour drive to the doctor and Merritt would be fitted with a new cast. The process was grueling. First, the old cast had to be sawed off and then the doctor would stretch Merritt's foot into a more corrected position. Merritt was be crying in pain during these stretches. Finally, the new cast would be applied and Merritt would normally fall asleep.

During these first few weeks of treatment I had the opportunity to research club foot treatments. Certain aspects of this doctor's treatment just didn't add up with the Ponseti protocol I was learning about. Most alarming, was that this doctor wanted to put Merritt under general anesthesia in order to perform a tenatomy (a procedure where the doctor cuts the child's Achilles Tendon.) According to Ponseti protocol, this should be an in office procedure using only localized anesthetic. I did not want my newborn to be "put under." So, I found a new doctor. We had to drive even farther, but it was well worth it!

The new doctor, Merritt's current doctor, is just amazing. At our first visit, he sat with us and he explained the treatment and how it works... the REAL Ponseti treatment. Our previous doctor had wasted weeks of Merritt's treatment by falsly claiming she was following the Ponseti method. It was so upsetting, but at least we were finally on the right track.

Point of this is... If your child is born with a clubbed foot or bilateral club feet, please check the list of Ponseti CERTIFIED doctors before making your first appointment. You can find this list on the website linked in the beginning of this post.

Merritt's Birthday, March 5, 2009

We were unaware of Merritt's "defects" before he was born. During my C-section, I was able to see my son all wrapped up in a blanket. He was absolutely beautiful. While anxiously waiting in recovery for my newborn son to return to me, my husband walked in... with no baby. I remember what he said so clearly, "Honey, everything is fine. He is fine. He just has... well, a little boo boo." I could see the anguish behind his smile. At that point my husband began to explain exactly what was "wrong" with my perfect little baby boy. In that moment, my world came crashing down.

I kept reassuring myself, "Niki, it is only his foot, we can get through this, we can fix this." But, nevertheless, front and center of my thoughts was always, "What if something else is really wrong? Does he have a syndrome and we just haven't figured it out yet? Will he ever run and play with his brother? Will he ever be NORMAL?"

Please understand that during all this, my love for my son was always there. Not for one second did I ever wish him away. I just wanted to make him better. I didn't want him to suffer... ever.

Here is a photo of Merritt's little foot at birth.