Penelope's Clubfoot Journey (so far...)

We walked into our 20 week ultrasound with fingers crossed that legs weren’t! All we had on our mind was the question of if we were having a son or another daughter! 

That is exactly what we walked out knowing as well. 

What we DIDN’T know, was that while the ultrasound tech had a smile on his face while he happily informed us of our baby’s gender, he was concealing other knowledge that we would later learn.

About a week or so later we received a call from someone at my OBGYN’s office informing us that the ultrasound tech had marked the feet as ‘questionable.’ 

What on earth did that mean! 

For now it just meant that we had an appointment at a hospital 2 hours away for a more extensive scan.

Questionable. Are they there? Does she HAVE feet? 

With little Googling, I came to a conclusion that it PROBABLY means clubfoot. That was about the only thing coming up for feet visible via ultrasound. I didn’t research anything further at that point.

A few weeks later we sat through another ultrasound where at the end we were informed that she does in fact have Bilateral Clubfeet- that means it affects them both. We were also told that we would need to schedule for a fetal echo (heart scan) because they couldn’t get a clear enough shot. 

Apparently it is fairly common for clubfoot to be a symptom of a bigger issue, affecting other organs, rather than just a deformity on its own.

After many many weeks of driving 2 hours from home, to sit through multiple ultrasounds, fetal echoes and growth scans (we were also dealing with gestational diabetes and they were worried about how big she might be), it was finally determined that all of her organs were perfect.

Although we wouldn’t know the severity of the clubfeet, knowing it was ‘all’ we were dealing with, I allowed myself to research. 

I found it difficult to find articles, or even blog posts like this, just detailing what we were headed for. I did however come across a few Facebook support groups that have been amazing - I will list them at the bottom of this entry. My friend has a son with Mastocytosis, and she said finding others going through it really helped her cope. 

I looked some up right away. I was NOT ready. Just reading the first few posts, I was a hot mess. People celebrating in their 18m olds standing unassisted for the first time, a one year old finally crawling- looking back I now see that I was unfortunate to catch a few extreme cases but I was devastated. It was weeks before I could look again, but I’m glad I went back.

The ladies on there were happy to answer every question as they’d all been there at some point. We all started at a place with a big question mark, not having any idea what lay ahead or how we would cope with it. I learned that we should strive to find a doctor who is Ponsetti trained. It’s a specific method of dealing with Clubfoot that is nearly 100% effective when done properly.

I was informed that, based on Ponsetti Method, there would be a series of casts. 

Each one would be different from the last to fix her feet, a few degrees at a time. Once the feet were manipulated to a proper positioning, they would be done with castings. 

But it’s not over! Then comes what's called Boot and Bars. Which are straped boots with a bar connecting them in the middle. This keeps the feet stretched out, and has to be worn for 23 hours a day, everyday. 

After a few months they then only wear them when they sleep at night and naps until about the age of five. Until that time, bones are still pretty soft and much more likely to relapse back to the same position.

I spent as much of the pregnancy not thinking about it as I could, but whenever I would talk about it, I would start bawling uncontrollably, even if I started the conversation fine. Clearly it was bothering me a lot more than I even know. It came in waves, realizing little things that she wouldn’t or couldn’t do. All those cute baby shoes I’ve had hanging around for 5 years…useless. All the adorable footed jammies I got as baby gifts…can’t use those either. Taking showers together are off the table. 

Swimming next summer? Not unless she’s in nighttime only bars by then. The list goes on an on and every day I seemed to think of another obstacle.  I also hated to admit that a part of me wondered how I would feel about her. Would I look at her and not see a cute baby? Would it be gross? I had no idea, and I hated having those thought about my child.

Finally the day came, sooner than we expected, when we got to meet the beautiful Penelope. At 37 (exact) weeks pregnant, I woke up feeling a few concrete contractions. 

I went about my day as planned and kept track of them on a phone app. I went to a mom workshop, Starbucks, grocery shopping, an eye exam, and a massage I had planned early in the morning. The contractions were never consistent enough for me to subject myself to the hospital. 

Then during the massage it got pretty real, and they were coming less than five minutes apart. On the drive home (luckily my husband was driving) it got so bad he had to pull over through them because every bump and dip made me feel like I was being shattered. 

We were headed home to grab my 5 year old daughter’s overnight bag and get her situated with the sitter. Once we pulled into the driveway the contractions were coming fast and I admitted it was time to head to hospital. 

My husband ran in to grab our daughter's stuff and when he came out I said I was headed in for just a second because I really had to pee and didn’t want to risk accidentally going in the car. 

Thankfully he followed me in. I can’t imagine if he had sat out in the car waiting for my return. 

After sitting down, I realized OH NO! It’s time. 

My husband was pleading with me to please just get back in the car. “The hospital is 2 minutes away”, he yelled. I tried to walk out, made it just to our sidewalk and turned around. Walking made it worse! I could feel that she was lower. 

Reentering the house, I had a split second to make a decision. Lay on the couch, or head back to the bathroom. 

Instinctively, I went back to the bathroom. Squatting was what my body wanted. He ran to the car to grab Hailey, and sent her upstairs to her room. 

I pushed one time and felt her head come out a little. I pushed another and felt her head come out all the way, breaking my water. Pushing just one more time, and her whole body slid out, right into the toilet (erm...water birth?) 

My husband snatched her out and she began to cry right away. The paramedics arrived 20m later (they got lost…) and once at the hospital everything was perfectly fine. Me and baby were completely safe and healthy!

We both remember taking a split second somewhere in there to mentally notice her feet. We didn’t care one bit! Of course made no difference to the amount of love we had for her. She was ours and she was perfect.

The first few days presented some learning curve challenges. Diaper changes were a little difficult because she would pull her legs up to fetal position causing her feet to go directly into the messy path. 

Socks and pants were a bit harder to put on, and took some time to get the hang of it.

We spent the first few weeks of her life fighting insurance companies to get the proper referrals to get things going. 

I read stories of babies starting their castings at 2 days old, and almost all by at least 2 weeks old, and stressed about how long it seemed to be taking. Being military we had a lot of hoops to jump through. We had to wait and wait for Tricare to approve the request, then get word to us about it, then call and set appointment with a doctor and hope its sometime soon. 

We also have the added challenge of living in the middle of nowhere. (Seriously.. look up Fort Irwin, CA on google maps…) All specialists are quite a drive from where we live. 

After 3 incorrect referrals, they finally had us on track to see Dr. Zionts of UCLA in Santa Monica. We had 4 days notice of this. It is roughly a 4 hours drive with normal traffic. We had absolutely no idea how on earth we were going to pay for this. We looked into military loans or any other assistance. 

Seeing as we had 5-7 weeks of this at a minimum, short term loans didn’t make sense because while it would help us NOW, it would hurt us while paying it back and still trying to make appointments. 

While insurance does reimburse because we have to drive so far, that doesn’t help with the out of pocket expense since we don’t see that money for many months. We finally tucked our tails between our legs and admitted that we needed help. Many people had come forward and outright asked how they could help and offered monetary assistance, so we decided to start a GoFundMe campaign (peer financial crowdsourcing) to allow people a way to donate to our cause.

We were able to make our first trip thanks to Penny’s grandparents.

The first drive there was nice and relaxed and I didn’t feel nervous at all.  But the very second I wheeled her stroller into the hospital, I started crying. 

I immediately felt so bad for her and guilty for what we were putting her through. It was hard, at the time, to remember that we are doing this for her, so she can have full function of her feet and legs and lead a normal life. 

While I was so upset it took so long to get things rolling, I was suddenly very appreciative for the 3 weeks we got with her beautifully unique feet and tiny baby legs.

Dr. Zionts was so nice. Many women in the support groups have actually dealt with him, none having a bad experience. 

He answered all of our questions and gave us a run down of what we can expect through the end. 

He told us that 90% of patients need what called a Tenotomy, a tendon lengthening surgery where they clip the Achilles Heel, at the end of the series of casts. 

That was intimidating news, but at least now we knew. 

The casting itself took about 15 minutes total and Penny did wonderfully. She didn’t fuss at all, and just stared at them with wonder. 

I was shocked. I was expecting her to scream in pain, and for this to just be a terrible thing to witness. That wasn’t the case at all.

After they were done I nursed her before putting her back in the seat. 

The was something else I was nervous about. Was she going to weigh a ton more, was she going ot be difficult to hold? Not at all. They used fiberglass soft cast roll, not plaster so it only added maybe a pound or so. 

The only thing about holding her is I now put as much emphasis on supporting her legs as I do her head because I’m afraid of the bulk putting strain on her hips.

Once we left the hospital we decided to go visit the ocean- my first time! It was an opportunity to check another worry off my list. I had invested a bit of money in baby carriers early in the pregnancy and wasn’t sure how they would work now, if at all. Check! She wears just great in my Ergo Style carrier. I havent tried any wraps yet, but it’s on my list!

Also, cloth diapers. I would have been very sad to see her newborn stash go to waste, but they also work just fine. We just have to make sure they are tucked above the cast. 

The casting also means her toothpick legs finally fit into all her baby leggings!

The first evening was pretty rough. I was glad we had gotten a hotel because putting her through that long drive after experiencing this the first time would have been way too much for this sweet baby girl. 

In the evenings she is most active, so that is when she gets most frustrated at her inability to kick her legs. Thankfully, her fits don’t last too long.  We really did luck out with a very easy going baby.

Two days later, we noticed her toes seemed a little more tucked in than we remembered them being., signifying that the cast had slipped down.  I took to the Facebook groups to ask if this is bad, and what should I do? 

Immediately, a slew of responses poured in, all saying the same thing. 

Take that cast off, NOW! Get her to a docter ASAP for recasting. 

A roll between her legs helps support her hips while sleeping on her side.

My heart was breaking. How are we going to afford to do this again so soon? 

Thankfully, even though it was after 8pm on a Sunday, Dr. Zionts answered his personal cell and confirmed that yes, we should take it off and try to get back sooner than our next scheduled appointment. 

So after a ton of scrambling, getting approval at work, withdrawing what had been donated to GoFundMe at that point, on Tuesday we headed back. After a long drive, a quick casting, and another long drive we were back home. 13hrs we were out of the house. She was miserable in her car seat. It breaks my heart to have to do this to her so often!  If nothing goes wrong requiring an extra trip, we have to do this once a week throughout the casting phase.

This past Friday we made the trip for the third time in 7 days. We were able to bring our older daughter this time and made a small vacation out of it by introducing her to the beach. Thank goodness it’s free!

We still have an incredibly long journey ahead of us, but we are in much better spirits knowing what to expect, than we were when everything was a giant question. It also helps that we have now seen, just from the first cast, that the treatment is working! Her feet already look so much straighter. 

When I began my research, I hoped that there was a detailed account of what there was to expect. I know every child and every case is different but it would have given me at least the ground work of seeing what's in store. I hope those who aren’t affected by this don’t mind me utilizing my soap box, and I hope those that are find this gives you a little peace from the constant wondering.

Resources: 

Ponsetti International

ClubfootIs Treatable Facebook Support Group

Clubfoot Community of California

I’m going to just leave this here at the bottom in case any one would like to show their support. I encourage you to share the link as well. Thank you so much!

GoFundMe: Penelope's Clubfoot Treatment Fundraiser

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