Wednesday, October 22, 2008

Club Feet

Today we took Ben to get casted for his feet. I thought it would just be a consultation appointment but they went ahead and did the casts right then. We went to Shriners hospital. First of all, let me just say how amazing that place is. It is a children’s hospital in the avenues that is run by the Shriners (a tier of the masons). There are other Shriner’s hospital similar to this one throughout the US but this one serves all different parts of the west- Colorado, Wyoming, Utah etc. They deal mostly with orthopedics- joints, bones and muscles. And they are 100% free. We do not pay a DIME, nor does anyone who goes there. Haylee (my youngest sister who was born without an arm) actually went there when she was little. I remember my mom used to take her up to SL once a week to go to Shriner’s. She was fitted with prosthetic limbs and she got a new one every time she grew out of the old (and those things are PRICEY), She received physical and occupational therapy and one-on-one care. And now being a beneficiary of Shriners hospital myself I am even more amazed at what they do there. The doctors were INCREDIBLE. They were so caring and walked us through the whole process. It was so touching. While we were there we saw children with many other different disabilities, some were in wheelchairs, some had club feet like Ben. I guess every Tues morning they have “club feet clinic” and that’s when they work with children like Ben with club feet. They said right now they are seeing 12 children. Some are from Utah but most are from other states. If we were living in another state Shriners helps with transportation and accomodations, they are seriously amazing. But we live 10 minutes away- what a blessing. What an absolute blessing. I was sort of overwhelmed with emotion as I was there- overwhelmed with the needs of some very sweet children, including my own, and then just amazed at the generosity and kindness of others- the Shriners who contribute and make it possible to run this entire hospital- it is overwhelming to me and so completely touching.

We sat with a doctor who answered all of our questions. No one knows what causes club feet. This renowned doctor, Doctor Ponseti, who the doctors at Shriners have trained under thinks it’s something with myosin- a part of the muscle-that has sort of malfunctioned in the leg and foot. Some people have said positioning in the womb but this doctor really thinks it’s something more genetic with mysoin. Anyway, they really aren’t sure. But it’s about 1/1000 kids who are born with club feet and most all of the cases are totally correctable
.

So the process- First: casting for 5-20 weeks- which means that every Tuesday we will go in and they will take off Ben’s casts and we will be able to bathe him and then they will put new ones on. Each cast moves his feet just a little bit more (sort of like braces) until they are in a good position. Step #2. Possible cut of the Achilles tendon. This happens in about 90% of the cases in club feet. That tendon is too tight which is part of what pulls the feet inward so they cut the tendon which grows back lengthened (like a salamanders tail). Finally step #3- braces. After the casting and cut of the tendon, Ben will most likely wear braces on his feet 24 hours a day for about 2 or 3 months. Then he will cut back to wearing the brace only during naps and at night. Ideally this is done until age 4 but the doctor said most kids make it to about 2 or 2 ½ . There is chance of recurrence in which kids go back to wearing the braces or casting if necessary but after age 7 the chance of recurrance is very very small. So it’s treatable completely and Ben will probably be totally fine in the long run. But getting those casts on today was so sad to me. I held him as they put the casts on and he cried. They go up his entire leg and he’s so uncomfortable. I imagine it hurts too to have them put his foot in a position he’s not used to being in. Plus he loved having his legs curled up by his body and now they are stuck in two heavy casts that he can not move at all. He has cried and cried today, this cry of pain and it has broken my heart.

It’s interesting what life teaches you though. This experience is so minor in comparison to what so many children and parents experience. And I am only getting a taste of the feelings these parents experience as they watch their children in pain or as they see other people stare at their children- a reminder that indeed their child is different. But my heart has been softened today and I have felt compelled to count my blessings, the way God helps us in our lives, and the goodness of other people. We hear so much in the world today of what is going wrong- especially right now with all our politics, economics, foreign policies…but today I was the benefactor of some incredibly generous people I do not even know who will help my son heal his feet. Today I saw children who suffer and parents whose hearts break to watch them suffer but who keep going cheerfully. Today I watched my son cry in pain because his legs hurt but I could only be grateful that we have the medicine and technology to fix what his body did not give him and that he will be able to run someday. Today I was touched by my two year old's look of concern when he saw his week old little brother in casts “Ben have an owie mommy?” Today I felt the sweet spirit of an infant as he cried and then fell peacefully asleep on my chest. Today amidst pain and need I saw the hand of God.

18 comments:

The Wents said...

That was amazing Erin. I love your spirit. You guys are in our thoughts and prayers, especially sweet little Ben.

The Farrell Family said...

I love what you wrote Erin. It is so hard to watch your baby in pain. I'm sorry little Ben and you guys have to go through that. You have such a great perspective though. Shriners sounds amazing. What a blessing for so many people.
I loved talking to you today. Let's do it again soon.

The Millers said...

I feel so lucky to now be in touch with you, and to be reading your blog. I was so touched by what you wrote about Parker and your feelings for him now that Ben is here. And this post is so touching. What a sweet baby Ben is. And what a blessing to be so close to this amazing hospital that can help Ben. He seems so small to be going through this though -- I'm sure your heart is aching for him. You are in our thoughts and prayers.

ohana=)mama said...

Children teach you more about the world and those around you than you ever thought possible. I am learing more and more every day. I love reading your posts. Really this might be a blessing in disguise as all hardships turn out to be.

Erica said...

First of all congratulations on a beautiful baby boy. Erin, you are amazing to have had Parker natural, and then to be brave enough to do it again. I totally agree though, the pain is over in an instant. We hope everything goes well for little Ben. It is amazing what they can do these days, but having a newborn myself, it is tough to see them in any pain or discomfort. I loved reading about what's going on in life. THis blog thing will help us stay in touch.

Chris said...

Erin, congratulations on your new little one! Babies are such a wonderful gift. As a mom of a baby with clubfeet, I'd like to encourage you to join the nosurgery4clubfoot yahoo group where you'll find lots of other parents who have been where you are and can help you with issues as they come up. I'd also like to mention that the ponseti method is wonderful when done correctly. Normally, even the most severe clubfeet are corrected in 4 - 8 casts, sometimes followed by the achilles release. Incorrectly doing the method can cause problems in the future so please check it out. I look forward to seeing you on the group!

Rachel Mae said...

What a beautiful post, Erin. Thank you for sharing. Brought tears to my eyes.

Chelsea said...

Oh my gosh Erin he is so gorgeous! I can't believe you had him already! Congrats we are so happy for your cute family! What a surprise to look on your blog and see a darling new baby! It sounds like it has been an amazing experience already. The spirit that a new baby brings into a home is different than any other feeling and it is the best! I'm sure it is the hardest thing in the world to see your perfect little baby be in pain! You are all in our thoughts and prayers, please let us know if we can do anything for you guys!! I actually had club feet when I was born too. It is so amazing to be living in a time where modern medicine is outstanding! But it still doesn't make it easy to see your baby in pain and we're sorry you have to go through this!

KESLER KREW...Cami said...

we are so blessed are we not? sounds like a tough little guy already and an opportunity for you to reach others who might be dealing with similar circumstances. luv ya er, cami

Ben and Lori said...

I'm practically bawling. Erin, what beautiful things you said. Little Ben is so lucky to have a mom with such an amazing spirit. I am seriously in awe of you sometimes. I home little Ben feels better and gets more comfortable.

Molly Malia said...

he is soooo cute! wow 3 weeks early?? man that makes me nervous... i have 8 to go.
my sisters baby had club feet. she went through the same thing ben is... but at 10 months she was walking and you can not even tell she ever had a problem.

Emily said...

As a mother there is nothing worse then seeing your child in pain and going through something so difficult, especially at such a tender time in their lives. Your perspective is amazing and inspiring Erin. It is no small miralce that we are able to see the many tender mercies of God that fill our day to day lives in the midst of our trials. So many times these go unnoticed without those trials bringing them more clearly into focus. Ben is so blessed to be loved in such abundance.

Shannon & Summer said...

I am so sorry Erin. What a hard and emotianaly draining experience...and it is only just beginning. You will be in our prayers.

Barrett family said...

Erin I loved your comments. We have been through so much with our youngest, Olivia, it is so difficult to see them in pain but I am cannot tell you how many times I am so thankful to live in a time when there are medical miracles every day. I will pray for you and your little family. He is beautiful and this will be just a twinkle in time when you look back.

Jared and Shelby said...

I knew you were due around now and wanted to check in and see. I teared up reading your last few posts. Babies are angels! You are so sweet and my heart goes out to you guys and your precious little Ben. You are amazing and your boys are blessed to have you:)

Emily said...

Erin, you are so strong. I am so grateful for you! We will see you Thursday! Love ya!

Unknown said...

I know you don't know me but I am friends with Nina Carey. She told me about your baby because we found out through our ultrasound that our baby has clubfoot as well. Thank you for everything you said. Your post was very helpful for me and my husband as we will probably be going to Shriner's as well. This was good to read as a preparation for what we will probably go through as well. If it's okay, I'd love to contact you about different questions I have. My e-mail is kellywright86@gmail.com Please e-mail me if you are available. Thanks so much!

Danielle Smith said...

You don't know me, but I came across your blog. My daughter was born with clubfeet and she finished the casting a little over a month ago. I would be happy to give you any insight or answer any questions you might have or want to know from a mother's perspective.