Zofran and Clubfoot

First, a brief update - Peter is 15 months old now, and he is doing great. His last appointment was mid-December, and his orthopedist said his feet look good. He got his third pair of new boots on Wednesday (he's now in a size 3). Putting them on is a bit more difficult because he's much more mobile - he thinks it's hilarious to try and throw himself off of the bed or changing table as I'm trying to strap on his boots.

He isn't walking yet, but he crawls all over the place (even with the BnB on!) and tries to pull himself up (usually when the dishwasher is open so he can try and throw dishes across the room). I tend to have late walkers (my oldest son didn't walk until he was 18 months) so I'm not worried. 

Now, on to the reason I'm emerging from my (unintentional) hiatus.

In one of the clubfoot support groups I'm in on Facebook, someone posted a link to info about a class action lawsuit related to women who took Zofran during pregnancy and then had a child with a birth defect. I'd read about Zofran potentially causing cleft palate and heart abnormalities a few months ago, but I had no idea that clubfoot was also a defect that Zofran may allegedly cause. (The link has not been proven, it is just suspected at this point.)

I did take Zofran regularly in the first trimester while I was pregnant with Peter (I also took it regularly during my pregnancy of his older brother, Gabriel, who does not have clubfoot). So, I filled out the form and submitted it. I received a call literally two minutes later from a lawyer, had a 30-minute phone conversation, and ended up signing paperwork to participate in a class action lawsuit, should one be filed.

I have the option to drop out at any time if I feel the need to do so. It's a contingency case, meaning the lawyers will only get paid if the lawsuit prevails and there is some kind of monetary reward (in that event, they get 40% and I get 60% of whatever the individual reward is).

But I didn't sign up to participate because of the money - if there is a link between Zofran and clubfoot (or other defects), I want it publicized, and I want the company held accountable for making sure that other moms know the risk. Women need to be able to make an informed choice about taking it during pregnancy. I wish I had known. Now, because of the suspected link, I will not take it during any future pregnancies, despite the crippling nausea I always experience. I don't know if it caused Peter's clubfoot, but I'd rather not take the risk if there is one, just in case it was the cause.

Anyway, if you are a clubfoot mom and you took Zofran in the first trimester, as I did, you may want to find out more information about the lawsuit. You can fill out a questionnaire here, and the law firm will call you if they think you are eligible to participate.

Bear in mind that if you are chosen to participate, and they end up filing a case, you will be involved in litigation. They will likely comb through your medical records from your pregnancy and try to find out if you did anything else that could have caused clubfoot. Affidavits, depositions, and maybe even court testimony may be required. But again, read the contract carefully before you sign (if given the opportunity) so you know exactly what you are getting into.

A Long Overdue Update

Yes, it's been a while! 

Today is the one year anniversary of the day he got his first casts.

Then....

Now:

He turned one year old on October 7 and we had a fun party for him the previous Saturday.

We're in maintenance mode right now. We put on the boots at night, right before bedtime, and take them off again in the morning. Same old, same old. :)

Since he got his new boots back in May, we've had some issues with pressure sores, so we finally got some pressure saddles from the orthotics shop (see the white things shaped like a Pringle under his middle strap on the left boot) and those seem to be helping.

I read this post about the "Bloody Boots and Bar" and thought it was spot on. The BNB can be annoying at times (especially when the poor kiddo has things like pressure sores happening) but we're so thankful that the treatment is, all things considered, relatively easy and non-invasive. 

It's World Clubfoot Day!

An anniversary passed a few weeks ago that I didn't realize at the time. May 17 was the one year anniversary of the day Peter's bilateral clubfoot was detected via ultrasound. If I could have known then what I know now, I would not have cried myself to sleep that night.

The first few months were the hardest, but we have come such a long way in such a short time. Today, Peter is almost 8 months old. He wears the boots & bar for 12 hours at night, and that's it. No one even knows he has clubfoot unless I tell them.

To any mom whose child has been newly diagnosed with clubfoot and who might be reading this, I want to tell you something: it's going to be okay.  It really is. The casting will be tough, the tenotomy surgery is scary as hell, and adjusting to the boots and bar will take some work, but it's going to go by so fast you won't even realize it. You'll blink, and all of a sudden your baby will only be wearing the boots and bar at night and it will just be another part of a typical bedtime routine. And there might be relapses, maybe even other surgeries down the road, but you will get through it because you are strong, and so is your child.

Ponseti International Association (PIA) designated June 3rd as World Clubfoot Day. The date was chosen to commemorate the birthdate of Dr. Ignacio Ponseti, (1914-2009) the developer of the Ponseti Method to treat clubfoot. The goal of World Clubfoot Day is to raise awareness about clubfoot disability and its prevention using the Ponseti Method, a non-surgical treatment that includes gentle manipulation of the feet followed by the application of plaster casts and temporary bracing.

Check-up Day!

Peter had a check up at the orthopedist's office today. We saw his new doctor, Dr. Belthur. The doctor said his feet look great!

We also got a prescription for new Mitchell shoes, because he has just about outgrown his old ones. His bar needs to be lengthened, too. 

In non-clubfoot news, he is sitting up by himself and he has two teeth (both on bottom). Not quite crawling yet, but he is rolling around all over the place. 

He is a growing boy! So proud of my little man.

Boots and Bar Bling!

Peter has some new boots and bar bling! I ordered a bar bumper (basically, a cover for the bar portion of his brace) from Taz at Bar Bumpers and it came today.

Peter was so excited!

Here's a close-up of the cover:

I wish I'd ordered it earlier -- say, in December when he first got his bar -- but better late than never. It's so cute and we both love it. Hopefully it'll help protect Mommy's tummy from getting whacked when we nurse without his sleep sack on. :) 

Boots and Bar Update - Nighttime Wear Only!

We've successfully transitioned to only nighttime wear of the boots and bar as of March 12! Per the advice of Dr. Segal, we went straight to 12-hour nights, with 12 hours free during the day, and Peter has adjusted extremely well. He loves playing with his feet and it's so fun to watch him!

To make things easier, we put the brace on around 7:00pm, and my husband takes it off right before they leave the house for daycare at 7:00am -- that way our daycare providers don't have to worry about it and we can just leave the brace at home. On weekends, I take it off whenever we get up in the morning, usually between 7am-8am.

Taken on St. Patrick's Day, March 17.
He's not wearing the boots & bar in this pic but is still holding his feet in the brace position.
Force of habit, no doubt!

Our next check-up is May 22, but sadly it won't be with Dr. Segal. :( A few days ago, I was told by another clubfoot mama from PCH that Dr. Segal is moving to Wisconsin. Thankfully, there is another Ponseti-certified doctor at PCH (otherwise we'd have to drive to Tucson), and I've met him before -- he did Peter's second casting -- but the news still made me sad. Dr. Segal was so wonderful throughout the entire process and it's sad to think he won't be able to see Peter's progress as he grows. Maybe I'll send him the link to this blog. :)

2007 CMN Miracle Awards: Dr. Ignacio Ponseti

How cool is this? LeVar Burton (a.k.a. Geordi LaForge in Star Trek: The Next Generation) and Dr. Ponseti in the same video! As a huge Star Trek fan, I'm geeking out.


I wish I could have had the opportunity to meet Dr. Ponseti in person. What an amazing man. I'm so grateful for what he's done for Peter, and all the children with clubfoot.