Finding Perfection in Imperfection – Learning our baby had a birth defect and our Clubfoot Journey

According to societal standards, I’ve pretty much done everything according to schedule so far in my life. And it’s turned out somewhat textbook – I’m a married mom in my 30’s with 1.5 kids and a dog. Well technically I have 2 dogs and only 1 child so far, but you know what I mean. When you’re planning out your life you never think something can go wrong. Bad things happen, but to other people. You never think your baby will be anything less than “perfect”.

My husband and I FINALLY agreed we (let’s be real he) were ready to be parents when we turned 30. We had been together since were were 21 and married at 29. I’m actually really grateful that we waited to have children; I got to party like a rock star for the entirety of my 20’s. Now it was time to pass all that hard earned wisdom down to a tiny version of us right?

We tried for 6 months before that test was finally positive. And let me just tell you that when you’re trying to have a baby getting your period is like taking a bullet. Every. Single. Time. So of course that’s why when we finally get a positive test you have to take like 6 more just to be sure!

In the beginning everything was normal. Well I had severe morning sickness (should be called all day & night sickness) and lost about 17 pounds in the first 6 weeks from throwing up. I’m not gunna lie to you it didn’t get better, I was sick like that my whole pregnancy, but I did get used to it and learn to deal with it – Zofran is a God send!

They day we found out was the 20 week ultrasound. They do the anatomy and physiology scan and you find out the baby’s gender. It’s literally the most exciting day of the pregnancy up to that point. I had been working in orthopedic surgery for 4 years at that time and was very familiar with reading medical imaging such as xrays, ultrasounds, CTs, and MRIs. So not only could I fully identify what was what on the screen, but I knew something was wrong. The tech was spending an enormous amount of time on the legs and feet, and not saying much about it. Finally, without an explanation, she went and got the specialist OBGYN to come and take a look. She also spent a lot of time looking at the baby’s legs without saying much. Then she turned the monitor off, sat down, took a breath, and told us our child had a birth defect. He had a right clubfoot. He would require years of treatment. He would have gross motor delays and have difficulty walking & running. He would have visual deformities of the right leg with significant decrease in muscle tone. I mean pick an emotion, because at that appointment we felt them all.

I made it my mission to spend the rest of my pregnancy learning as much as I could. I basically got a google degree in clubfoot. I was also super blessed to work in the orthopedic field and have the surgeons as a free and willing resource. My pregnancy got bumped up to high risk. I was referred to the Boston Children’s Hospital Advanced Fetal Care Center. I had to have biweekly anatomy scans and growth measurements. Turns out, my son didn’t have true clubfoot. He has positional clubfoot. Which basically means genetics didn’t cause his birth defect growth restriction in-utero did. He was transverse breech and I had been measuring small my entire pregnancy. My body did this to him. Say to that what you will but I know it’s inadvertently my fault. He never spun and was delivered via c-section without incident at 11:16 AM 9/5/17. And just like that my whole world changed.

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The current treatment standard for clubfoot is the Ponseti Method. Children are casted shortly after birth in a leg cast that goes from toes to hip. Every week the cast is removed, the foot is stretched as far as it’ll comfortably go, and the leg is re-casted. The number of casts needed differs depending on severity of the foot, but it’s generally 6-8 casts. Then about 80% of patients receive a tenotomy of the achilles tendon. In layman’s terms, they sever the child’s tendon (because it’s too short due to the clubfoot). This is done in office under only local anesthesia because infants are very high risk under general. The leg is then casted again, this time for 3 weeks. Then casting is completed and the foot is essentially fully corrected.  Afterwards, they’re supposed to go into a leg brace called the boots and bar. It basically looks like a mini snowboard. Their feet are immobilized and bound to the bar, and they’re supposed to wear this 23/7 for at least 4 months.

Harrison’s treatment went incredibly well. He got his first cast at 6 days old. He ended up only needing 3 casts to correct his foot and no tenotomy. Thank God! Because honestly I can tell you now I probably wouldn’t have been able to handle it no matter how strong I was acting at the time. He was put into one last cast, a 4th cast, while we waited for his leg brace to be made.

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During my pregnancy I read everything I could get my hands on while researching my son’s condition. I found that I was extremely apprehensive about putting my son into the bnb (boots and bar brace). It’s so barbaric to me; my poor child is strapped down to a bar and can’t move his legs for the first 6 months of his life? Not to mention the several complications related to bnb – rashes, blisters, pressure sores, hip dysplasia and knee problems.  Not to mention all the horror stories I heard from the mom’s in the clubfoot support group on facebook about how their babies screamed all night every night from being strapped to that freakin brace. I made it my mission to find an alternative treatment. And I did. Jerald Cunningham is an orthotist in Maine. He worked with clubfoot babies for years and shared my feelings on the bnb. He designed the Cunningham Brace (DTKAFO) and it’s a unilateral brace made from plastic that grows with the child. Each brace is designed specifically for that child and made on an individual basis. However, there is extreme rigidity in the orthopedic and clubfoot community when it comes to deviating from the bnb and Ponseti method. Dr.’s not only refuse to prescribe the brace but will no longer work with a patient if they have the alternative. I got kicked out of the 20,000 member strong clubfoot mama’s facebook group for talking about going with a unilateral brace. So I was faced with a decision – follow the status quo and stick with the old treatment regardless of the consequences for my child, or risk everything to give him something better?

Of course I went with the Cunningham Brace! I’d do anything for my child. We are so so blessed that we live in New England and have access to Boston Children’s Hospital. It is the number 1 pediatric research hospital in the world. People travel from every corner of the planet hoping to have their children treated there. Not only was Harrison’s AMAZING orthopedist (Dr Mahan) completely open to using an alternative brace, she had another patient that was already using it. So we made the hour trip to Wells Maine (Cunningham Prosthetics is located in Wells and it is the only place in the world where this miracle brace is available) and got our brace.

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I have never regretted my decision to go with an alternative treatment. He’s the happiest little baby and I feel like the bnb would have ruined him. I’ve become part of this amazing little community of moms that just trying to make a better life for their child that was born with a crooked foot. Some of them travel from Europe and Asia to Maine for treatment.

Now at almost 15 months old, Harrison is crawling at warp speed and cruising without issue. His foot is 100% corrected and he shows zero signs of relapse. Ya he’s slightly behind on his milestones, but only by a month or 2. And when you’re told throughout your pregnancy and beyond that your child might not stand or walk at all, when that day finally comes the tears flow and your heart soars that much more and you couldn’t give a fuck less if he’s not doing it “on time”.

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