Expecting Infant W/ Clubbed Feet

Hi M.,
My son, who is a very active 3 year old now, was born with severe club feet. I have to be honest with you, it was really hard for us to cope with in the beginning. I will tell you everything we've went through if you want to hear the negatives. But right now, I can tell you that his feet appear "pigeon toed" only, and he is super fast. We are going to a specialist on the 13th in Denver to see what other options we have at this point. I promise you, everything will be all right, just a little heartache involved for us mamas.

M.,

God is still in the business of performing miracles! You will get through this!

Our six-year-old son was born with club feet. His right foot was turned so much his toes pointed at his butt. The hardest part for us was that we didn't know it until he was born. What a shock to be handed a deformed baby. Knowing ahead of time is such an advantage for you.

If possible, you want to avoid surgery. This means months of casting, but I promise you it is worth it. The sooner you start getting her legs in casts the better. What they do is stretch out her muscles and straighten her legs as much as they can and then cast them. As her legs and muscles grow, the muscles on the inside of her foot and ankle will stretch out and cause the foot to be corrected without having to cut into the muscle. Surgically cutting the muscle will cause the muscle to be more vunerable the rest of her life, so avoid that if you can.

Our son received his first set of casts at nine days old. They went from his toes all the way to his hip. For the first three months, we went in and got him recasted every two weeks. As his growing slowed down, they recasted once a month. At both four and five months old, our son was getting too strong for them to effectively stretch out the muscles, so they had to put him under. Technically, this was considered surgery even though they didn't cut at all. We did this twice. This was the hardest part of his treatment. First, even though the "surgery" was the first one of the day, we had to stop feeding him at midnight. You cannot explain to a four-month-old baby who nurses on a regular schedule why all of a sudden he can't eat. (Don't forget to pump and bring the pump to the hospital with you!) They should let you nurse as soon as she wakes up. Although going through that twice was SO HARD, it was so worth it. Those were our last two castings and they were extremely effective. Because his muscles were so relaxed when they casted them, it really worked! He was sore the few days after being recasted and therefore cranky.

After being casted for almost six months, they put him in (I forgot the name) special shoes connected with a bar. When they say to have her wear them all the time, they really mean all the time. The only time our son did not wear them was when he was in the bath or swimming. As a mom, this is hard because you worry about your baby not developing at the right pace. Will she be able to crawl? Will she be able to sit up? But, please know that your daughter will develop just fine. Our son had such stong abs from lifted his feet that he could do sit ups at seven months - no kidding. After some months, he just wore them while sleeping. Yes, it is hard. Yes, it is worth it.

I would suggest you find your pediatric orthopedic NOW. Go in and meet with the doctor before the baby is born and make sure you can get her into the doctor within a week or two of her birth. The sooner, the better. Shriners is great, but I don't know how quick they are. Look into this now. Have you looked into getting the kids on the state insurance plan for kids? I didn't see what state you are in, but every state has a federally funded medical insurance program for lower income kids that aren't low enough for medicaid. Look into it now as the process takes lots of time.

Don't buy any pants or newborn socks. She won't be able to wear them. Our little guy was born in May and worn onies (spelling?) for the first six months of his life. When the weather got cold and he was still in casts, he just wrapped his legs in a blanket when we went outside most of the time. Wait to buy clothes if possible. If you receive clothes as a gift, don't take the tags off so you can return them or regift them if she never gets to wear them. I think the baby being a girl will be very helpful in this area. We couldn't put our son in a dress. ;)

Please feel free to write back with more specific quesitons. I have rambled on for quite a while, but I am more than willing to answer questions or offer support.

When our son was born, I stopped working as a teacher and my husband was not working and we were both in graduate school. I never thought we would recover from that season of our life, but we did and you will too. Hang in there.

T.

Hi M.,
I do not have experience directly with a child with clubbed feet. However, I am responding to let you know of my practice. I am the owner of Holistic Pathways in Denver. I have found that supporting myself first, allows me to then support others. I have found that gentle herbal remedies, massage and yoga are powerful healing tools and overall, safe during pregnancy, nursing and always.
I am telling you this not to sell myself, but to suggest you look into local options for holistic practitioners, a yoga class or two. And it does not need to be extremely expensive. Because once you learn some simple techniques you will be able to support yourself.
If you live near Denver, please come by my store/clinic, even just to look around and ask some questions.
L. Golub, Clinical Herbalist
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Holistic Pathways
423 East Alameda Ave.
Denver, CO. 80209

My oldest, now 6, was born with a unilateral clubfoot ( one food clubbed). We had no idea. So you are already at an advantage as you can read and learn and decide and have a plan. We opted to use the Ponseti Method.
We joined the yahoogroup- nosurgery4clubfoot http://health.groups.yahoo.com/group/nosurgery4clubfoot/?....

We preferred this method over surgery first which is what orthopedic surgeons were offering at the time.

We didn't find the method at all difficult but many do...which is why many Orthos don't discuss this method. But certainly discuss this method with them.

This group was a great preparation and advice. He had his first cast on Day2 and then weekly for a while. He wore a special brace that kept his foot in the right place once it was adjusted. He learnt to crawl, and pull up wearing it. He would walk if we didn't dissuade him ( the soles aren't flat) We were late starting because of bureaucracy (insurance, being overseas,lack of an experienced Dr) and lack of knowledge ( new overwhelmed mom, no knowledge of other ideas for 3 mtns....lack of sleep) otherwise walking wouldn't have been a problem.

He walked around 13mons. By then he wore his brace 12 hrs a day- for him that was just naps and sleep time. His foot is fine. We have yearly check ups to check for relapse.
This group has a wealth of information about Shriners etc
totally treatable- just depends on how you want to go about it and the ultimate experience that fits your child and lifestyle. Feel free to message me if you want to talk more.

I don't have any personal experience with clubbed feet, but I do know of a girl that had some surgeries through the Shriner's Hospital for Children for clubbed feet. This is a totally free service through the Shriner's hospital. I'm sure that you can call the El Korah Shrine downtown, or look online for more information: http://www.shrinershq.org/Hospitals/Main/.

I hope this is helpful for you. Good luck, and congratulations.

I have a good friend where this is genetic in her family. She has 6 kids. Two had minor issues and just had to wear special shoes to help keep the feet straight while they learned how to walk. One though was severe. It required many surgeries. He still has a bit of club to his feet, but he is 9 years old and plays soccer and baseball (I'm sure he plays more than those two but those are the ones I can think of). His dad is very much into sports along with his older brother. Anyways. The kids does real well in what ever he wants to accomplish. But his parents are huge supporters and they believe in him and let him excel in what ever he wants.
It was tough at the beginning for them all, But take one day at a time. My own 2 year old had 15 surgeries by the time he was 15 months old. It can be very stressful, take it one day at a time (sometimes on hour at a time). Do you have any family that can help with your 2 year old? My family was a huge support for me, sometimes taking the kids, other times sitting at the hospital so I can spend time with my other kids. The older ones (my youngest was 3 when my last was born) once they saw the baby, understood and we made sure that they had "alone time" with him before each hospital stay, then they were very good while mommy was gone and helped who ever was watching them around the house.

Good luck

Dear M.,

It sounds that you have a lot to chew on right now, I hope that as time passes you can feel less stressed and that you'll be able to organize your time after becoming a mommy for the second time.

About your baby's clubbed feet. I was wondering if the doctor told you how bad that would be. I was born 28 years ago in Ecuador and my feet were a little clubbed. I remember going to orthopedic surgeons, osteopaths, and other type of bone doctors since I was very, very little. My condition did not require surgery, but I slept wearing a ferula (this was a piece of metal on which a pair of orthopedic shoes were attached and could be regulated to move the bones) until I was in the 4th grade. I also used orthopedic shoes until grade 3rd.

I gotta tell you that I walk just fine, I dance a lot (I'm a party animal latina), and I exercise 6 times a week. I have had some problems with my right foot which did not straighten completely but it is not too painful and you would not even notice unless you pay close attention to the way I walk.

It is sad to see that in this beautiful country mothers like you have to worry about their baby's health due to the health system. I am sure there must be a way to help your baby at a low cost. Please keep in touch and tell me how your little girls' feet are. If it is not too bad, I can tell you how to make a homemade ferula.

Good luck my darling. Please keep in touch

Hi M.,
My neighbor had twins and one of them was born with club feet. She said it wasn't that big of a deal. They put her little baby in casts. I think just seeing her tiny preemee in little casts up to her knee was the hardest part. Her little girls are 2 1/2 now and the one has no problems.
Also, so sorry to hear about your husband losing his job. It is scary times out there. What was his occupation? You had mentioned he was going to school also.
Contact me if you want some information about making some extra money with Arbonne. You being a registered nurse and working part time is the perfect environment to share Arbonne and its botanically based, good for you products. Men are highly successful in this industry, as well, and I could show you information about during a recession, this industry succeeds -also, network marketing is the trend of the future.
Good luck with all that you are going through. You will make it through!
L.

You might find this thread helpful - http://www.westsidemoms.org/forums/index.php/topic,3419.0...

Hi M., I'm the mom that Maida gave you the link to in an earlier post. My son was born with bilateral club feet (he's 5 now) and began his treatment at 3 weeks of age. It would’ve been sooner, but he had complications at birth – unrelated to the club feet. You are so lucky to have found this out early so that you can prepare a bit for it.

First, you'll need to find a pediatric orthopedic Dr (our pediatrician referred us to one at Children’s Hospital in Denver all of whom have been fantastic). Our doc used the ponseti method to treat our son.(you can google it as well but here’s a link:)

http://ponseti.info/parents/index.php?option=com_content&...

It’s a non-surgical method to manipulate the feet back into a more “normal” position. On our first appointment, the doctors gently maneuvered his feet (because they are so pliable at that age) to face outward and then casted them in that position. I won’t lie to you … that was very hard to watch because it is painful, but it was over with quickly. The casts they put on went all the way from his hips to his feet. We would then go back every week to get the old casts off and new casts put on for about 3 months. (Each time they would manipulate his feet outward a few more degrees.)

Now our son needed surgery when he was 3 mos old to clip his Achilles (no muscles were cut) and elongate it. It was a very tiny incision, and the surgery only lasted an hour, plus he was able to go home the same day. He had more casts for a few more months then we were done with that part. He was then fitted with a brace (denis brown bar) and shoes. The type we had were leather shoes with a metal sole that attached to a long metal bar that stretched between his feet. Our son had the brace for about 2 years, and every few months, he could be out of the brace for longer and longer periods of time until he only needed it at night. As he grew, we would get new shoes and larger bar as needed.

When he was about 3, he was totally done with casting and braces. Now with our son, he regressed, and according to our doc, he’s the first patient he’s had that regressed. Ian began walking up on his toes and eventually we realized that he physically couldn’t get his heels down to the ground. His feet have never turned back inward. We found out recently that Ian’s regression was due to abnormal (and very uncommon) scar tissue that built up after his first surgery, so this past January, he had additional surgery to correct this (bilateral posterior medial release – the “z-cut”- and joint release.) He gets his final casts off next week (after 2 months) – but even this hasn’t slowed him down much. He won’t need physical therapy or orthotics. This is finally IT!

I have to say that through all of this, it NEVER slowed Ian down a bit. He has had a very normal childhood, met all of his normal milestones – crawling & walking included – on time or early. He doesn’t remember the casts very well, but he does remember the bar.

Please, if you have any questions, no matter what kind, please contact me. This is a lot of information to digest and IS a lot to go through, but so totally worth it - especially every time I see Ian run, jump, etc…No one knows by looking at him that there was anything ever “different” with him.

Financially, your daughter should be able to qualify for SSI and Medicaid due to her having a “disability”. I would make phone calls to you state agencies now so they can be in place when she is born.

Good luck and know that you have a support system here. I really wish that I had known someone who had gone through this beforehand, please take advantage of us here.

My sister was born with club feet 30+ years ago and although I don't know much of what my parents did, everything did turn out well. She had surgery and had to wear casts and corrective braces and shoes while she was little, but she eventually walked normally, (only slightly pigeon-toed). When she was little she went to Shriner's hospital regularly and as she became older it was less frequent, but still went every couple years for a checkup. I would definitely check into Shriner's Hospital. They do a great work, and charge little or nothing at all. Good luck to you and your husband and your little bundle of joy.

I don't know much about clubbed feet, but if your husband just lost his job, I'd try a little closer to baby's birth and see if you qualify for some kind of discounted insurance. Medicaid is retroactive up to 6 months in CO if you sign up for it to be, so you can sign up later, too, if the expenses are too much and you qualify later. There are a lot of programs up from Medicaid, and the laws are likely changing soon so more people qualify. It's almost better if you can get in with a doctor first as most doctors are not accepting new Medicaid patients. A lot of hospitals have other programs, as well. I have also gotten as much as a 25% discount for cash payment as some places. Hope that helps for some of the financial stuff, at least. Congratulations on the baby girl!

Dear M.,

I can't imagine what you are going through. All I know is that Scottish Rite Hospitals will take care of your daughter's feet after she is born. I have known some people who were born with the club feet and are not doing wonderful. One young man went on to plat varsity basketball etc. I know that you probably don't expect your daughter to be the next professional player, but just wanted to let you know that it is not the end of the world. I never even noticed that this teen had had clubbed feet. I will pray for you and for your husband to find a job asap.

my husband and i just found out our son, also due in june will be having bilateral clubbed feet. it was a shock at first because we are so young and this will be our first child. however there are options and at the moment im without medicaid. stressing about it doesnt do me any good, deep breathing and yoga and streching do help ease the stress though. its strange you dont qualify for medicaid though, try applying more than once. since your husband just lost his job and if you yourself are not working then you should qualify. i wish you the best of luck and will be praying for you. im currently researching grants and organizations to help with our son. so far my mom only knows of one. shell be looking into it for me. so dont give up hope. theres always a way.