Clubfoot Update

On Wednesday, J had an appointment at Shriners for his clubfoot.

J was born with a unilateral clubfoot - when he was 5 days old, he was placed in his first of eight casts to correct his left clubfoot.  After 8 casts, he was placed in a Ponseti brace, that he wore full time for 4 months.  He continues to wear the Ponseti brace at nights.

I went to the doctors appointment feeling fairly confident that the doctor was going to schedule J for a heal-cord release surgery.  As J has started to walk around more with support (while holding on to furniture), I've noticed he turns his left foot out.  He also kind of swings his left leg around from his hip to take a step.  I assumed that his heal cord had tightened too much and would prevent him from walking correctly or comfortably.

At the doctors appointment, J's doctor was so kind and reassuring.  He stretched out J's foot, moved it around, and was beaming.  He said that his foot actually looks really good!  He said that J is actually able to get his foot past neutral - something that I didn't think he was able to do (the goal is that J will be able to stretch his foot 10-15 degrees past neutral).  Because of the clubfoot, his heal has a little extra baby fat, making it hard to really gauge where "neutral" is.  He also said that as J starts walking more and is bearing more weight consistently on his foot, the tendon will continue to stretch.  And, the best news of all, no surgery this summer!  He said that for clubfoot patients, it's better to have a tendon that's a little too tight than one that is too loose.  For that reason, he wants to wait to make any kind of decision about surgery.  And weather we do surgery now, or when J is 2 or 4, the outcome will be the same.  So, no rush.  He asked me and J to come back end of October to re-evaluate, but he was very positive about J's progress and prognosis.

One of my students was also born with a unilateral clubfoot - and, just like J, it was his left foot.  He was also treated at Shriners.  He's such a good sport - he let me pick his brain for a good 10 minutes about his life with a clubfoot.  He said that he has never felt any different, his foot has never held him back, and he can run really fast (but he doesn't like to run) - all comforting things for a mom to hear!

So, end of October we'll head back down to Shriners and see what the doctor has to say.  Between now and then, we're really going to work hard on getting J walking (he has very little interest right now in walking because crawling is faster) and keep stretching out his foot.

Clubfoot Part 2

Back in July I posted about living with a child with clubfoot.

When I posted about our experience with Jack's clubbed foot, he had just had his 8th cast removed and had been fitted for his Ponseti brace.  I posted then how it had been quite the challenge for us and that it had been hard to adapt to the casts and braces.

What a difference a four months can make!

The change hasn't been with J - his foot is still clubbed, we still put him in braces every day, we still have doctor's appointments every other month.  

But what has changed is that we're no longer with Kaiser.  We're now with Sutter and Sutter has sent us to Shriner's Children's Hospital.

Shriner's is amazing.

We went on Thursday and I was nervous making the trip downtown to Shriner's with J.  New doctor and new location.  But from the second I walked in to Shriner's it was awesome!  Every person I interacted with there was so kind.  Everyone was smiling and happy.  No one was short tempered, impatient or rude.  There was a volunteer with a service dog hanging out in the waiting room cheering up kids and families who were waiting to be seen.  There was a wall full of books to read, pages to color and toys to play with.  We got in to see the doctor super fast.  Our doctor was one of the kindest men I've ever met.  He was so nice and positive.  He was pleased with the progress J had made and so we're now down to wearing the brace during naps and nighttime.  The doctor made me feel encouraged about our situation, come what may.  He told me that there was a real possibility of surgery in 6 months to a year as J grows, but he was so calming that I am not worried at all.

My attitude has changed too.  In four months I have met so many people who have been so kind and encouraging when the see J in his braces.  People have literally stopped me in stores to tell me that they or someone they know had a clubbed foot and turned out just fine.  Total strangers!  And they've been so kind!  And one of my voice students and her son, who is one of my piano students, both had clubbed feet.  Her son was also treated at Shriner's.  They both had nothing but positive things to say!

I would never choose to have a child with a birth defect.

But, for the situation that it is, we are very blessed.

Clubfoot

When we had our 20 week ultrasound, the tech noticed that something was off.  She paused the ultrasound and made a phone call.  I was concerned, but D reassured me that everything would be ok.  Shortly after our ultrasound, we got a phone call from Kaiser's genetics department.  The lady I talked to said that our tech had noticed that our son's left foot did not look normal and that they'd like us to come and do another ultrasound at the genetics department in downtown Sacramento.  

The following week, we went to the genetics department of Kaiser and they performed a second ultrasound to specifically look at J's left foot.  A doctor came in, looked at the images, and confirmed that J's left foot was clubbed.  The ultrasound tech then checked for a cleft palate, because clubbed feet and cleft palates are linked.  She also checked to be sure that J's hands were open and not curved in, because that would signal that there was a chromosomal defect.  Fortunately, she did not find a cleft palate and both of J's hands were open.  The doctor concluded that it was a spontaneous clubbing.  

After the appointment, we called both of our parents and told them about the clubbed foot.  D's dad was awesome and did some research and found a whole bunch of pro-level athletes who had one or both feet clubbed at birth.  It was so comforting and gave us a lot of hope.

About a week later, we had an appointment with a pediatric orthopedist to discuss how J's clubbed foot would be treated.  She told us that Kaiser uses the Ponseti method to correct clubbed feet, so there would be a series of casts (typically 5-6 casts), possible surgeries depending on the severity of the clubbing, and then foot braces until he was 4.  All in all, very treatable.  (Although, no parent wants to hear that their child will be in casts, having surgery, and wearing braces.)  We had no idea how severe the clubbing of J's foot would be and so no idea how long treatment would take, but we left feeling confident that J would be just fine.

When J was born and we were able to see him,we noticed that his left foot was really stiff and we knew right away that it would take quite a few casts (some clubbed feet are really flexible and don't take as long to treat).  J was born on a Wednesday, released from the hospital on a Sunday, and on Monday morning we went to the orthopedics department and J had his first cast put on. 

Our doctor has been fantastic!  When he first met J he said, "I think he's going to be a football player." - we immediately liked him!  Upon looking at J's foot the first time, our doctor said that it wasn't the worst clubbed foot he had ever seen, but it wasn't the best.  He determined that he wouldn't need immediate surgery, but he might need a heal cord release surgery after casting and before the brace.  However, his personal philosophy regarding clubbed feet is that he would rather do extra casts than do a surgery.  The casts are not your typical hard plaster cast, but are fiberglass and I could take it off at home 2 hours before our next casting appointment to give J a bath.  J had a new cast put on every week and it took 8 casts to put his foot into the correct position.

After removing his 8th cast last Thursday, the doctor decided that J did not need the heal cord release surgery and that we would move straight into the Ponseti brace!  J got fitted for his brace a couple hours later and has been wearing it 24 hours a day ever since.  With the Ponseti brace, he will wear it full time for 3 months and then during naps and night time until he's 4.  However, J's doctor wants to see him in 2 months to evaluate the foot and make sure it hasn't relapsed or tightened or needs the heal cord release surgery.  We have to be very diligent in making sure that his left foot is in the brace correctly, that the brace is on tight enough, and that he wears it all the time.  We also have to be sure that when he's out of the brace (he can be out of it for 1 hour a day) that we're working his left foot and stretching it.  The biggest cause of clubbed foot relapse is parents negligence.

Dealing with J's clubbed foot has been difficult.  I feel like we just can't catch a break!  We tried for so long to have a baby and it broke my heart to find out when we were finally pregnant that our baby boy had a birth defect and that the first few years of his life would be so challenging!  I feel fortunate that his birth defect is so correctable and that he won't remember most, if not all, of this process.  However, during the casting process, J was growing so quickly that he grew out of his casts several times and would just scream in discomfort and pain.  And now, with the braces, he screams every time they're put on because they're so heavy and uncomfortable and he hates being immobilized.  And I'm worried about his foot relapsing and that it will cause him more pain and prolong the correction process.  I know that the clubbed foot won't affect him long term - I mean, his foot will always be a little different looking and his left calf will always be a little smaller, but those are small things.  I just hate that he has to go through so much while he's so little!  I wish he could just be a normal baby (but when have we ever been normal, right?).

You can see J's left foot is clubbed.