Thursday, April 26, 2012

Our Story: Blake Emily's Clubfoot Story

My husband and i had been trying to get pregnant for over a year with no luck at all. i would constantly think i was pregnant but test after test proved me otherwise. after a year went by i stopped stressing about it and just decided to go with flow. a couple months went by and the way i found out i was pregnant was totally at random. we found an unused pregnancy test left over from when i thought i was pregnant previously. i took it just to throw it away and get rid of it but it came back positive. i was in complete shock. i bought 3 more - they were all positive. i was so in shock that i took a blood test to REALLY make sure i was. and i was, 100% positive. i cannot tell you how happy we were. negative test after negative test really starts to take a toll on you as a woman. you feel like you're not doing something right or maybe you'll never be able to have a baby. i'll never forget that moment when it came back positive.

All of our check ups had been great so far. everything was right on track, our baby was developing beautifully. at our 20 week ultrasound appt we found out we were having a girl! we were so excited! dresses, headbands, tons of pink coming our way! :) ultimately we didn't have a preference on a gender, as long as the baby was healthy - that's all we cared about.

At our next OB appt everything looked great again, heartbeat was strong, blood pressure good, everything was golden. towards the end of the appt our doctor said the ultrasound tech noticed something in the 20 week ultrasound that we need to follow up with. that's when she said club foot. i had never really heard of it before, i thought it might have been like duck feet, something mild no big deal. the doctor said following up is just protocol and 9 times out of 10 "it's nothing." sometimes the baby's feet will be pressed up against the uterine wall so it makes the feet look a little squished and that was most likely the case. so, we made an appt for a follow up at a doctor's office that specialized in ultrasounds. we didn't think much of it because the OB was so confident that it was nothing, and we had nothing to worry about - AND if it was club foot, it's totally treatable no big deal.

We went about our week and went to the scheduled ultrasound appt. walking up to the door i don't remember exactly what it said but all i remember seeing was "high-risk pregnancies." okay, now i'm starting to get a little panicked. i'm not feeling at ease. i just want this to be over, for the ultrasound tech to tell us, your OB was right, everything is perfect and be on our way.

That was not the case.

A nurse came in a did the 1st ultrasound, then the doctor came in and did it again (just to be certain she didn't miss anything - part of their protocol.) He finished the ultrasound and we were just waiting for him to say, she's fine, you can go. instead he confirmed she did have clubfoot. he said it's actually bilateral club foot. my head was spinning at this point - i was asking myself a million questions at that moment. how did this happen? did i do something? is she okay? what do we do now? what is club foot actually?? i was thinking a million things all while trying to hold back tears. i was terrified for my baby. what was going to happen now?

He said with bilateral club foot it could also mean she would have other genetic issues as well. down syndrome, spina bifida, and a bunch of other stuff that was swirling around our heads. he started talking about heart issues, brain issues, the works. he suggested getting an amniocentesis asap since i was over the suggested date at getting one. and gave us business card to talk with their genetic counselor about the amniocentesis. let me just say overwhelmed does not even begin to describe the feeling we had. we went in thinking it was nothing, the 20 week ultrasound was just misread and it's fine...we ultimately decided right then that i wouldn't get an amnio. in my opinion they are WAY too risky and whatever test came back wouldn't change the way we felt about our baby so there was no point for the test. the doctor said we would have to come every 1-2 weeks to make sure the baby stays on track with her growth. not what we wanted to hear. we left that office feeling so defeated. it really felt like a blur to me, leaving the office..walking through the parking lot..then i just broke down. i didn't even make it to the car. i sobbed. i sobbed my eyes out. my husband held me and told me everything was going to be okay. stupidly, i went home and googled bilateral club foot. let me tell you right now, DON'T DO THAT! stupid idea. it showed every extreme, every horror story imaginable and it just made me freak out even more. my husband banned me from googling it and eventually i stopped stressing out about it. google can sometimes be an evil thing.

We went to the weekly appointments at the "high-risk pregnancy" facility and each time she was progressing right on schedule and her heart looked "beautiful" as the doctor put it :) they always did an in-depth look at her heart when we had these appts - because we were told with bilateral club foot the heart could have a lot of issues linked with that. but thankfully, each time she was looking wonderful. at about 30 weeks or so we decided not to go to the appts anymore, she was looking great each time - we felt everything was going to be okay. and honestly, the ultrasounds were insanely expensive and we just couldn't afford those in-depth looks anymore.

Throughout the pregnancy we found out what bilateral club foot was and what we would have to do to correct her feet. we met with her future orthopedic doctor while i was still pregnant to go over what needed to happen when she was born. Which included casts for 6-8 weeks (each week she would get new casts) then possibly surgery depending on how her feet were progressing, then braces.

Her due date was approaching fast and it came and went. with a little help from pitocin (and an epidural of course) our perfect baby girl, blake emily, was born at 6:24am feb 8th, 2012. 8lbs 3oz and 20in long of amazing-ness :) i remember looking at her little feet and thinking they were so cute. so curled inward. so perfect to us.

Her orthopedic doctor said within the first 10 days is the best time to start the casts so we went in when she was 9 days old. my husband had to hold her down while the nurse helped the doctor applied the first casts. they kept saying how strong she was throughout the process. she was kicking her legs as hard as she could to fight those casts and my heart just broke for her. she screamed like you would not believe. after he was finished they left the room and my husband and i just cried...cried at what our baby has to go through. and for the next 3 days she cried non-stop. i mean non-stop. it was insane. NOTHING would sooth her. she would cry during feedings, when we held her, in her sleep. just constant. we ended up going to the ER to have her casts removed because we were convinced they weren't on "right." after they were off she was a different baby - content. we waited another week before going back to have them put on again. when talking about it now with my husband i think WE were the ones not ready for the casts. we didn't know how it would be with a newborn baby in general, let alone a baby with casts. it was just too much too fast, for all of us.

So, we went back to have the 1st set re-done and i don't know what happened in that week but she was A LOT better. i'm talking night and day difference. we had to give her tylenol that night but she was nothing like she was the very first time. and each week just got better and better. don't get me wrong - the process was still horrible. she still screams bloody murder when they're putting on the casts. but when we get home she's totally fine. she has her moments where you can see that she just can't get comfortable and it frustrates her but it's not insane crazy. and she still moves her legs like it's no one's business. she's going to have some muscles on her :)

We're on her last set of casts (thank god). she had to have a tentomy which went wonderful and she is doing amazing. her feet look great and we can't wait for the casts to come off and actually clean her cheesy toes haha. after these casts she'll wear braces for 3 months 23 hours a day then just at night for a few years. it's a long process definitely. and has been challenging for us all. for the regular joe hearing us describe the corrective process, it sounds like a breeze - no big deal totally simple. but, if you're not experiencing it first hand - taking her to the appointments, dealing with the fussiness from the casts, bathing challenges, clothing challenges (goodbye cute newborn pants/shoes), constant questions from people about it, their poop sometimes getting on their casts!, the financial anxiety, the strain it can put on your marriage and everything else that comes with it, i'm sure it does seem like a breeze to you. it's not. sure we've gotten used to it. we deal with it. but it's still hard. we take it day by day.

But i will say, even though it's hard, i would not change her for the world - even with her "deformity." i would go through it all again 1,000 times to get my perfect baby girl. all of the pregnancy emotions, the ups and downs, the anxiety and fear, all of it. i would do it all again in a heartbeat because she is perfect to us.

Thanks to Amanda for contributing to the Our Story feature for Faith Feet & Love. If you've got a story about dealing with clubfeet, or just want to share success stories, tips, or pictures, please contact us for more details.


  1. My baby boy was born in October with bilateral vertical talus. Similar to club feet, just turned differently. We went through 17 weeks of casting and a foot surgery to correct it.
    Reading your blog, I know exactly what you were and are going through. Its tough watching your baby go through all this. Completely sucks. But they are incredibly resilient. Will has learned to roll over front to back in casts and back to front in braces. He doesn't know any different and doesn't let them slow him down. Good luck to your sweet Blake!

  2. Amanda - your story reminds Heather and I so much of our own experiences. We really appreciate you sharing it so honestly. I think that helps everyone who is going, or has gone, through clubfoot!

  3. Amanda, thanks for sharing this story. I think you and your husband and your adorable little girl are so amazingly brave. I can only imagine what you've gone through. But I feel like I can relate on some level. My now almost 4 year old was born with tortocollis and plagiocephaly. Basically his neck was irregularly crooked to one side and his head flat on one side. We had weekly appointments physical therapists, surgeous, and cranial facial specialists for the first 6 months of his life to help repair it as much as possible. Then he ended up having chronic lung infections for the next year and having to be on supplemental oxygen for a year and a half. Like you said, it would seem like no big deal to someone else--just put the oxygen in his nose and go with it! Um, no. Until you've lived through it like you said, you just don't understand! I'm so glad shes done so well and improved so much. You are a beautiful family and she is obviously a strong-willed, brave, little fighter...perhaps just like her mom. :)

  4. Thanks for sharing! Yesterday at my 20 week ultrasound we found out we were having a baby girl and she may have club feet. I was just in tears. It took us 4 years to get her and all I wanted is for her to be perfect! I hope she doesn't have to go through anything painful. My poor baby girl!! Thanks for showing the real side of it good and bad... and you are right, GOOGLE is evil!

  5. Kat - We're sorry to hear that your baby girl will have club feet. Both Heather and I still vividly remember the day we found out during our ultrasound. And it's a lot to take in. Even though club foot is an overwhelming (at times) disability, every day we've had Eli it's been special. So hang in there, brace yourself for the tough times, but know that it is something you'll survive. You just won't feel that way at 3 AM. :)