It’s interesting the things you learn when you have children. There are things you expect to learn like how to feed them, get them to sleep, install car seats, and get crayon marks off the wall. But then there are the lessons you didn’t expect to learn. Like when your child receives a diagnosis, you learn a lot about that one specific condition. And the learning might never end. This is how I feel almost 5 years since we heard our daughter would be born with bilateral clubfeet.
But before I dive into our experience, here are some clubfoot facts:
- it is a deformity of the feet that occurs during gestation. One or both feet can be affected and can vary in severity.
- clubfoot occurs in about 1 in every 2,000 births. It is typically diagnosed between weeks 13 and 28 of pregnancy.
- the cause is unknown but has been linked to genetic and/or environmental factors.
- clubfoot is not life-threatening and is easily treatable shortly after birth but if left untreated can result in mobility issues.
- clubfoot can be an isolated diagnosis, or it can accompany other deformities or disabilities.
(For more facts and information about clubfeet, visit http://www.ponseti.info/home.html)
Being born in the United States with a diagnosis of clubfeet is hardly something people notice anymore. Treatments are easily accessible. You most likely have known someone who was born with clubfeet, and you didn’t realize it. Appropriate correction gives the clubfoot patient a better quality of life. But that doesn’t make the diagnosis or process of correction an easy journey.
I want to share our story. Because when a child receives any kind of diagnosis, it affects the entire family as they work through it together. You will find facts below intermingled with my italicized personal thoughts/feelings.
Our daughter was diagnosed with severe bilateral clubfeet (meaning both feet were affected) at 20 weeks gestation. Soon after, we met with a pediatric orthopedic doctor who trained under Dr. Ponseti on the best method to treat clubfeet in infants. We put together a plan for treatment for after she was born. Because she was born prematurely, her treatment plan was slightly delayed to allow her to gain weight. Once she was about 6 weeks old, her clubfoot correction journey began.
The Treatment Process
The Ponseti Method of correcting clubfeet consists of casting the affected leg(s) at the knee all the way to the foot. Because babies have such malleable bones, this doesn’t hurt them at all and their body’s typically respond very well to this corrective treatment.
That doesn’t mean they aren’t uncomfortable. Plaster casts are heavy, clunky, and when my daughter had them on, I didn’t even want to think about how it felt. I am so glad all this occurred when she was an infant. She has no memory of the experience.
Every week for 6 weeks we went back to the orthopedic for new casts. When the casts were removed, her precious legs and toes revealed improvement.
I was so happy to just hold her for a few moments without those obnoxious casts coming between us.
Before her last set of casts were put on, a procedure called a Tenotomy was performed. This is when the doctor has to release some tension in the tendons on the backside of the leg/ankle.
The waiting room
I know some of you mamas who read this will have had experience with infants having surgery. No matter how small or big the procedure…it’s hard knowing what is going on and you’re not there for your baby. Sometimes I still feel like I’m trapped in that waiting room. While the procedure and final casting only took 20-30 minutes, it felt like a lifetime to us.
After the final casts came off 4 weeks later, she was able to move to a boots-and-bar brace, which was worn 23 hours a day. After a few months of that schedule, she was able to move to nighttime-only wear. And after she turned 15 months, we said goodbye to the brace for good.
But that doesn’t mean our clubfoot journey ended like I thought it would after we said goodbye to the brace. The doctors and specialists, I know they do their very best to prepare parents and give us all the information we need no matter what diagnosis is given. But there is no amount of it that really prepares you because every child is different. Everyone will respond differently to treatment and every family handles medical issues differently.
I’m Not Sure It’s Ever “Over”
Years ago I had expectations of one day being “done” with clubfoot related matters. But now here we are, she is almost 5 years old, and I’m starting to realize she may have lifelong physical limitations from the deformity she was born with. Definitely not as severe as it could have been without treatment, but some things I’m not sure will ever be “fixed”. She trips a lot more than kids her age. She runs differently. Her balance and strength are not great. And while she is one tough little trooper, she has moments of discouragement when she struggles to keep up with her siblings. I don’t tell you these things to discourage you or have you feel sorry for her, I just think it’s important to share our story, even the not so happy parts. This is her experience and this does not mean every child will be the same.
I wish I could tell you I know exactly how to respond to my daughter when she struggles. I want to be able to tell you “this is how to deal with a child with physical limitations and the emotions attached”…but I have no such answers. Instead, I hold her. Listen. Cry with her. Cheer her on. Advocate for her. Remind her of truth.
From my Mom Heart to Yours
But mostly what I want to communicate to you mamas, whether your child has clubfeet, cleft palate, Downs Syndrome, autism, dyslexia, or any other condition or limitation… this absolutely affects you. Even if there is effective treatment, therapy, or a cure, it still affects you. Allow yourself the time and space to feel the feels. To grieve. Possibly speak with a counselor or therapist. Sometimes our hearts and brains have no appropriate “box” to put our feelings and thoughts when we are dealing with medically complicated or fragile children. So those thoughts and feelings become something we don’t deal with. I want to encourage you to deal with your emotions. You cannot pour into your family if you are not pouring into yourself.
If you have a mama friend who has a child with a medical condition now, or had a difficult medical situation in the past, allow your friend the safe space to talk about it. She does not expect you to understand or have a solution. Just be the friend who listens and offers support. Watch her other kids while she takes that one child to appointments. Text her coffee gift cards. Ask her how she’s really doing. Tell her she’s doing a good job, because I guarantee she’s questioning if she’s making the right choices for her child’s health. Thank you for being a good friend to her.
I’m Here for You
If you are a fellow clubfoot mama, reach out to me if you need someone to talk to. I’d be honored to listen and be a friend. You can find me on jaimistewart.com or on IG @jaimi.stewart And if any other mamas have questions about clubfeet, I’m more than happy to answer or point you to the answer.