Clubfoot · Uncategorized

Thoughts on Expecting a Clubfoot Baby

A second pregnancy is definitely a different affair. I spent so much time dreaming and scheming (and preparing the cutest nursery!) before the birth of our daughter. I also remember generally enjoying pregnancy so much more — it was such a miraculous, new event! I blogged about it all the time, I took weekly bump photos, I relished in the little things.

This time around… it’s been a little rough. It’s been harder on my body (probably because I’m in such absolute terrible shape… it’s definitely been motivation to get back to the gym ASAP) and with Adelina to run around after all day, I have no energy left. Oh, and baby #2 doesn’t have a room of his own. Plus I’ve had what feels like allergies — BAD — for the past six months, even though I’ve never had allergies in my life. So that’s fun. I know, I know, I’m complaining a little here.. but that doesn’t mean I’m not grateful for this pregnancy — I am — my husband is very excited to have a boy this time around, and so am I (and a little nervous!). It will be a lot of the same but also so different. The good thing about kids is you learn along the way, right?

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But there’s another discovery we made back at our 20-week ultrasound: this baby is extra special in more ways than one, because he has bilateral club feet (meaning they are both clubbed — pour mes amis français: il a les deux pieds bots). We had to go down to Denver back in July, to see a fetal ultrasound specialist, but we are very grateful she found nothing else to be concerned about. (If there is more than one malformation, it can be indicative of genetic issues like trisomy 18 or spina bifida) Thankfully, baby is doing great on every other measure.

In terms of congenital birth defects, this is about the least serious kind, it’s relatively common, and it is treatable to the point that the feet end up looking and functioning totally normally — IF the child gets some serious therapy. (Mia Hamm, Kristi Yamaguchi: born with club foot/feet! We’ll make a ballroom dancer of this kid yet!) So it also means we’ll be making LOTS of road trips to Salt Lake City to see a specialist, and that this poor boy will spend the first 5-8 weeks of his life in full-leg casts, then the next 3-4 years sleeping with special boots and a brace. We’re still learning a lot about it, and it’s going to be quite the road ahead, but we’ll just take it one day at a time for now.

I know on the scale of disabilities, thanks to modern science, this is one of the “easy” ones, but it’s still pretty overwhelming. All that said, we can’t wait to meet this sweet boy! I mean, just look at that cute face… 💙

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So back to what this second pregnancy has been like: add in the fact that he’s going to be born with a congenital birth defect. Yes, clubfoot is one of the “better” birth defects out there in that it’s completely treatable and CF babies generally move on with their lives as if it were all just a bad dream. But “treatable” also means dozens of visits to a specialist (in another state, in our case), weekly 4-hour round trips for the first two months, and a lot of pain and stress in dealing with an extra hurdle for sleeping, diaper changing, etc. CF babies get sores and calluses because of the casts and braces, and from what I’m learning, you always wonder if they’re not sleeping because the brace is bugging them/isn’t properly adjusted or if they’re just not sleeping because they’re a baby (probably the latter most of the time, let’s be real ha ha).

Anyway. I feel a little frustrated sometimes because I think some people try to minimize the impact it will have on our lives to make me feel better or something. “Oh well, it’s not a big deal at all, my cousin had a clubfoot baby and he’s totally fine now! It’s just some casts and braces and baby will be fine!” Well, yes. But it’s also: traveling on winter roads to a distant doctor. WEEKLY. While healing from giving birth. I was a mess last time around, I can’t imagine dealing with weekly roadtrips in that condition. And sure, the baby will be fine, but to be totally honest I’m not worried about him. He WILL be fine. Will I? My mental state was not tip-top after my daughter’s birth, so let’s just add in the stress of casting and bracing and staying on top of a treatment plan for fun. That will go super well! And let’s not forget I’ll likely be getting even less sleep this time around because I have an infant AND toddler to contend with.

So no, don’t tell me it’ll be fine. I already know that. Sure, I could be dealing with much, MUCH worse. It could be a life-altering disability. (Which, by the way, isn’t 100% ruled out at this point. The doctor thinks everything else looked fine in the ultrasound but the only way to really know he’s fine is to meet him at birth. But we’ve decided not even worry about that at this point, one thing at a time!) In the meantime it’s still pretty crappy for us, and just because others have greater trials doesn’t make ours any less difficult for us.

Anyway. On the other hand, I’ve been finding some great resources to help figure this all out. I just joined two Facebook groups (Clubfoot is Treatable & Clubfoot Mommas) and have been poring over the posts and comments and asking my own questions to get a better idea of what to expect and how to prepare. Living far away from any stores is a little stressful because I remember running to Target every other day when Adelina was a newborn, because we needed more of this or that or I learned X was suddenly indispensable. This time around, no Target or Walmart I can run to, so I’m a little obsessed with having everything ready to go and fully stocked. Thank heavens for Amazon Prime!

I’ve been learning a few other tricks in the process: for example, especially with bracing, early on the brace has to be worn 23 hours a day. Parents of CF babies say any opportunity to take the brace off is bad news because it means you can create excuses for yourself to not put it back on and “give them a break.” But this treatments is really dependent on rigorous application, and that falls on us as parents. So one blogger I ran across advised to either use snap pants or legwarmers — that way, no need to remove braces to remove pants and change the diaper! Genius, right?! And it just so happens there’s a website called BabyLeggings.com that makes all sorts of cute leggings (really they should call them legwarmers, that’s what they are) and has these awesome discounts — you see them in all those maternity “magazines” which are really just big ads for vulnerable expectant moms ha ha. Anyway, I used a discount code that gets you five free pairs, and you “just” pay shipping and handling (which amounts to $15). So that’s how they’re making their money, but it’s still a good deal in my eyes. The shipping was INSANELY fast (seriously, I think they were at my doorstep in two days!) and the leggings are really cute. I’m probably going to order more so baby #2 can just wear those with a onesie all the time and still stay warm/covered.

CF Parents also talk about random strangers asking questions or assuming your kid’s legs are in casts because you’re a terrible mom who dropped her baby… definitely looking forward to that. I don’t always do very well with random strangers asking prying questions ha ha. And with my husband’s job being very much in the public eye, I have to be careful with what I say and do in public. (You guys, the other day some random guy told my husband he heard a rumor I wasn’t happy living here. WHAT?! There are rumors about ME?! It really irked me, especially because it was absolute BS — I’ve been really enjoying our new life here, despite the transition period which is always a little tough when you move — based on what exactly?! Ugh.) I guess this is an opportunity to practice grace and educate people — just as long as they don’t ask while I’m in a truly sleep-deprived state!

After visiting the clubfoot clinic at Shriner’s in Salt Lake City last month and visiting with our soon-to-be doctor, we ultimately decided I’ll just give birth at our local clinic. We had considered traveling down to SLC for the birth since that way we could just get the first casting done in the first few days, but ultimately it doesn’t save us a trip and it was really stressing me out to have to travel in labor (or induce labor to fit our schedule, which I really didn’t want to do) and deal with our two-year old in the midst of all that. The doctor (who is awesome, by the way — she studied abroad in France for a few years, which was a fun connection!) said there was really no rush, so now I can relax and just focus on birthing this baby, then we’ll deal with the rest when I’m ready. I feel a lot calmer about the whole thing knowing I can take a few days to recuperate before jumping in.

Anyway, all that to say, there are definitely ups and downs. But the truth is I’ve been having more and more moments when I feel this baby kick and shift around in there and I realize I’m so excited to meet him. I can’t wait to see his sweet face and fall in love all over again. I wonder if he’ll look a lot like Adelina or if he’ll be completely different (I suspect he’ll look a lot like his sister)? Sometimes I feel overwhelmed with gratitude that I can have this experience at all — motherhood is hard, but it’s so wonderful and joyful too. And I can’t wait to cuddle and nurse that sweet newborn all over again. Even though I know how completely miserable it can be a lot of the time.

We watched General Conference the past two weekends and one of the speakers said something that really struck me, specifically in context with this whole experience. He said something to the effect of: “enduring well is a refining experience.”

“God invites us to respond with faith to our own unique afflictions in order that we may reap blessings and gain knowledge that can be learned in no other way,” Elder Evan A. Schmutz said.

It is so true. I have a tendency to grumble and drag my feet through trials. I sit and stew, asking “why me?” and thinking about how unfair it all is. But if I take that time to stop complaining and simply trust in the Lord, enjoying the moments of joy that inevitably come with the tough stuff, I can actually become a better, softer person. And maybe learn a little compassion for others in the process. I’m so grateful we just got to spend an entire weekend, just the three of us in our living room, listening to much-needed messages (eating yummy food!) and spending precious time together.

So here’s to our sweet baby boy joining our family! Ready or not, it’s happening — and at 11 days overdue I am MORE than ready!

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