Kilian's Quest

Written: Winter of 2012, when Kilian was 4 months old.

The story of two little obstacles. His feet.

When I was 3 months pregnant, Joe and I went on a running expedition through the mountains and coasts of Costa Rica. While on the trails, we were told a story about a boy who was born in a mountain hut 2000 meters up in the Pyrenees. He grew up climbing, running, and skiing. He has since gone on to become a champion sky runner and mountaineer skier. He is known to be kind, quick to point out the beauty in nature, loves adventure and says all his success surfaced from hard work. His name is Kilian Jornet.

The meaning of the name and the story of how we came upon it deep in the mountains of such an adventurous country stayed forever in my mind. On the day our baby boy was born, we named him Kilian Samuel Ferner. A name, to me, that means strength, adventure and hard work. I always imagined my baby being special and inspirational. I can tell you now that he is all those things. What I didn't imagine was for him to be born with congenital talipes equinovarus. Clubfoot.

This is the story that you might not have known about my Kilian. These are the pictures you may not have seen. This how I spent almost every Friday since he was born to make his perfect feet, perfect.

Kilian was born into this world with SO much love surrounding him. Kristin, one of my dearest friends came in just to be my labor and delivery nurse. Our beloved OB who delivered Declan just 2 short years ago was once again there to deliver my second son. Joe's Aunt Emilie, a NICU nurse practitioner, was there to assess and give him his APGARs. All 9 pounds and 8 ounces of Kilian was heard as he entered this world. He was perfect. Minutes after he was born, Emilie gently told me that his feet had some positional issues. A knot formed in my stomach when I saw them. It looked like he had two severely sprained ankles to say the least. They were bent and turned in, clearly not the way feet are supposed to be. I heard something about clubfoot in the background but I had no idea what that meant.

Clubfoot is a scary word if you don't know what it means. It comes from the way the foot is positioned inward like a golf club. With clubfoot, all of the parts of the foot are there and function, they just need to be put back in place like a puzzle. Tendons and ligaments are tight. I was reassured that he was healthy and that it was correctable. I asked how do I correct it? Who do I talk to? Does he really have clubfoot? Two feet? One foot? Will he be able to walk and run and climb with Declan? My world was spinning with uncertainty at the time. I just wanted answers. Tell me what to do! How did this happen? What did I do? Is it my fault? Somebody help him right now! I was screaming in my head. I was so scared for his little feet.

The second night after he was born, I stayed alone in the hospital so my husband could go home and be with our 2 year old. I spent the whole night awake holding Kilian in my arms. I just held him as he slept. And I cried.

I started researching. I felt so lost. I wanted to know how and why. It is unclear what specifically causes clubfoot. Intrauterine issues, positioning, genetics, environmental factors? It just seemed to happen. I have slowly started to let go that this might have been something I caused. I went on some crazy adventures while I was pregnant with Kilian. It took some time and reassurance from doctors for me not to blame myself for his feet.

Just a day old, I made an appointment with the wrong doctor before I continued my research and found the right one. I read and read and came across something called the Ponseti Method. This is a non-surgical process that involves a series of castings that slowly repositions the foot back in place. The method is so specific and special that not every doctor is properly capable and trained in it. People often travel to and from the University of Iowa to be treated where Dr. Ponseti himself used to practice. I had already gotten in touch with them and was ready to stay in the Ronald McDonald House there until I was told that one of the most recognized and top doctors in the country was actually located at Sinai Hospital in Baltimore. He was one of the first doctors to take the Ponseti Method out of Iowa and he wasn't far away from us. His name was Dr. John Herzenberg. I put all my trust in him for my baby boy. In return, he became our Saint.

I emailed Dr. Herzenberg my worries and pictures of Kilian's feet. I told him that I would do anything I needed to so that my baby boy's feet are NEVER the reason he can't do ANYTHING. Within hours Dr. Herzenberg emailed me back saying, "Your boy's feet will be just fine. He will be an Olympic athlete if he wants! Mia Hamm, Troy Aikman, and Kristi Yamaguchi were all born with clubfoot. I can see you Friday."

Kilian was three weeks old on that Friday. He received his first set of casts. He was casted for 10 weeks. Both feet, then one foot, then both again. We made progress and we took steps back. He had a tenotomy, where they cut the achilles tendon so that it heals to the proper length rather then being too tight from his foot being positioned inward prior to castings. He was Xrayed then measured with a protractor on his dorsiflexion. Dr. Herzenberg was extremely precise. I was extremely grateful. This is what we did every Friday. We drove, held him down as the loud circular saw removed his casts and then gave him a bottle as they repositioned his foot with new casts. He would cry. He would smile. Dr. H played soothing music for him, told us stories and taught us. The staff, all of them, care so much about Kilian it would bring tears to any mom. They, too, have watched him grow each week.

Kilian is now in his boots and bar. I call them his "snowboard shoes". He wears them for 23 hours a day and will eventually phase out of them over time. His feet are now corrected but the boots and bar are important to keep his feet externally rotated and avoid relapse, sort of like a retainer after you have braces. We do stretches with his feet mostly to work on his dorsiflexion during that 1 hour a day when his feet are free. It's a really special time where I can actually touch his feet, hold them and move them around in my hands. I have learned not to take little things like that for granted. I missed being able to hold him against me scrunched up in a little ball when he was a newborn. I couldn't do that because of his casts. It's been tough to use a moby wrap or a baby bjorn to carry him around. The feety pajamas that were given to him as gifts will stay neatly stacked and untouched- we won't be able to wear them because of having to wear his boots and bar at night for a few years. So we use a sleep sack during bedtime and we make every pair of knee socks and leg warmers he wears bright and fun.

I know there are bigger and harder things that could have happened when Kilian was born. God gives us what we can handle. Nothing about life is a guarantee. It's up to us to handle our situations with strength and optimism in hopes that our children will learn to do the same when they come across their own obstacles. It's our job to show them how special and wonderful they are; to teach them to embrace the gifts they are given; to encourage them to love life, themselves and each other. I am so grateful for modern medicine and for the love, care and support Kilian has received since the day he was born. As a parent, it's hard to see any child go through discomfort whether great or small. We, the parents, are their comforters, their protectors. Little do they know that sometimes they are ours, too. I now know that it's all going to be okay. Kilian himself showed me that.

Kilian is now 4 months old. He has been rolling over, grabbing, standing up with me holding his hands, and even army crawling across the floor (with and without his snowboard shoes). He smiles so sweetly, laughs so easily and his personality is becoming more apparent daily. My baby boy is strong and brave and happy and determined. I am so proud of him. He is just as special and inspirational as I dreamed he would be. Kilian and Declan running and climbing together is now a reality that I can see happen. I will celebrate every milestone of his with an extra bit of joy and appreciation.

For many women, clubfoot is found during their 20 week ultrasound. Once noticed, parents have 20 weeks to learn, prepare, read and even meet their doctor ahead of time to talk about correction. I have since met many pregnant woman who are coming to see Dr. Herzenberg to prepare. They smile at Kilian. I talk to them and although we are still going through the process ourselves, I tell them it's going to be okay. I tell them what I think would have given me some peace if I was sitting where they are at that time. Kilian's clubfoot wasn't seen in my 20 week ultrasound. I knew nothing about it until he was born and I first held him in my arms. Looking back, I think it happened the way it was supposed to though.

I am told that this will all become a distant memory as time goes on. I hope it does. What I won't forget about the story are the emotions and the lessons we experienced. The hardest part was realizing that it would take patience and trust to overcome this obstacle we were given. To me, his feet will always be my reminder of that. Our two little obstacles. They're perfect feet. They always were.