Surviving the life of a "High Needs" child & parent.

Tag Archives: Birth Defect

At 18 months we are going into casts again. Now that the Habanero has been walking it makes this session particularly difficult. It’s so hard to see the little guy crawling again but I think it bothers us more than him. We recently decided to see a new doctor who is a little further away from home rather than just going to the local Children’s Hospital for treatment. I feel like we were getting over charged for our visits to the Children’s doctor – $350 a visit WITH insurance. We really liked our PA, but the fact that it took a month and half to get an appointment to see the doctor each time we finished a casting session (3-6 casts for us) was pretty frustrating. This treatment session is due to the little man’s right foot intoeing, he’s been tripping over it quite a bit.

So we decided to start casting with a new doctor and so far it’s had it’s own points of frustration. The first session was only supposed to take a half an hour but it took an hour. It’s a hour and half drive from our home, so it pretty much shoots an entire day for one treatment. You can imagine when you are casting every 10 days (and trying to work full time) it’s quite a time commitment.

The Children’s Hospital used fiberglass casts which were pretty rough in texture so they scratched up everything but at least we got to pick a color. The padding used around the edges for this type of cast was much preferred for us; it didn’t come out and it didn’t fall apart. The little man was casted from his upper thigh all the way down his leg with his knee bent and foot abducted. The fiberglass casts were much smaller than the plaster. The only problem we had was that with our last session our little Habanero figured out how to wiggle his legs out of them several times. These sessions costs us about $150 out of pocket with our insurance.

This new doctor does plaster casts. Same length of the cast, but there is no additional padding other than some cotton and fabric to the inside of the cast which means that when our little guy started to move around on day 2, he also got some nice red line rub marks on his groin from the cast chaffing his legs.

I tried to relieve the rubbing by adding some foam weather stripping to the top of his plaster casts which seems to be helping but doesn’t stay on very well. After 3 days of wearing the plaster they were pretty much starting to break down not only on his knees but in the ankle area because of all the movement. With his crawling the plaster was flaking off everywhere and it’s all over the bed and carpet. And the fabric used as part of the cast is coming off too, so I had to duct tape his knees to prevent it from completely breaking down. I can’t really speak to the costs of the plaster versus the fiberglass yet because I haven’t gotten the bill.

One of my biggest gripes with the plaster though besides its weakness for a crawler and the messiness is the size of the casts. The plaster is much bigger and thicker than the fiberglass and so finding pants and socks to put over them really sucks. Two sizes up sweatpants are the only thing I can find to fit, and they must be loose leg. As for socks we are wearing some of dad’s old ankle socks. It’s actually kind of difficult to find sweatpants with elastic on the ankle these days I guess they are out of style now.

Finally, we were told that it would reduce our appointment times for the plaster if we removed the casts ourselves with a little soak in some warm water and vinegar. This is different than the Children’s Hospital; there the cast was removed by the PA and then we were given the opportunity to bath our little guy before the new cast was done. So now we are expected to remove the cast and make sure the bathing is done before we go to our appointment. Well I’m already waking up at 6 AM to go to our morning appointments for this new doctor and he says he wants the casts on until an hour before his appointment which means I’ll probably have to wake up at 4 AM just to get that all taken care of the day of.

Needless to say… something has got to give and I’ll be making some changes to the treatment plan this week because I just can’t see doing this for another month or two. I’m going to try and get the Habanero casted at the Children’s Hospital and only go up to the other doctor for evaluation. With the holidays and preparations for a new baby underway I just don’t think I can physically do it all, but I know that staying on top of treatment is important so we’ll have to compromise something. The new doctor told us that we could be doing casting on and off potentially until age 4 if we don’t get very strict about using our boots and bar at night, so that’s another challenge we’ll have to overcome in the near future.

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For my first posting about club foot, I wanted to give a little insight on why I decided to include this in my blog. At my second to last ultrasound during my pregnancy, our tech told us that we were going to possibly have a child with club foot on at least one side. She couldn’t confirm whether it would be both feet. In fact, 50% of cases of club foot are bi-lateral (meaning on both feet). We left our appointment feeling pretty shocked and very upset. What did club foot mean anyways? Sure we would immediately look up medical definitions online after leaving the office but that was no help.

Did this mean that our child would have a hard time walking? Would he be able to play sports? Why did it take so long before someone mentioned this to us? We had been getting very regular ultrasounds throughout my pregnancy because of the size of our little one but this was the first we were hearing that there might be any abnormality with his legs.

I’m not sure if it was just an oversight or if it’s something that developed very late in the pregnancy as he grew. Either way, needless to say the online information was not really very helpful. So I started searching famous people who were born with club foot disability and I found a handful of athletes who have been very successful in their careers : Mia Hamm, Kristi Yamaguchi, Troy Aikman, Pat Summerall, Leroy Butler to name a few. This was comforting news to a parent with so many questions.

I remember feeling such disappointment as I heard one of the nurses exclaim, “He’s got club feet!” after he entered this world. Being a C-Section, I didn’t get to see him come out, and hearing that put me into immediate tears. Even thinking about it now wells me up. As it turns out this test of parenting would only be one of the many so early on. As a mother, I felt like I had done something wrong. Why didn’t I grow him right? Was it something I did when I was pregnant? Would my child have a lifetime of obstacles because I messed something up? I drank my water, I took my vitamins. What happened?

Nothing I could find online talked about these feelings I would have or if it did, I guess you could say I was guilty of not doing very in-depth research in advance mostly because the tech had said he might have it. Well there were a lot of “mights” during my pregnancy and thank God none of them came true except this one. Despite this being a clear and present defect at birth my pediatrician told us to wait to see an orthopedist. Can you believe that? She said, “it might fix itself”. Clearly this something she had never dealt with in the past. As it turns out… these things don’t fix themselves.

Since I didn’t know any better, I took her word for it. We waited a month, and at his 1 month appointment I finally convinced her to give us a referral to see an orthopedist. On our very first appointment we were told that he was glad we had brought our son in so early, but he told us that we should have started him on the treatment immediately after birth. Again, feeling like I had failed as a mother by not having my child’s best interest at heart I was disappointed.

As the next couple of months whizzed by I rarely left the house, especially not with my son, because I didn’t want to have to deal with the attention I realized we got very quickly by having a child in full leg casts. Every time we did go out, I tried very hard to cover up the casts with full leg pajamas or blankets.

Even still, I find myself struggling with this as he is in casts again. I can tell you what helped the most in those early days is that when people did see his casts, they would assure me that everything would be okay. Several of these strangers had experienced club foot themselves, or known someone that had and they made a point to reach out to me – wherever we were – and comfort me. With every confirmation, my confidence in their statements was built up more and more. And so, probably the most important bit of information I have to impart on this blog about club foot to other parents or family members of club foot babies is that everything will be okay.

Seek the proper treatment for your child early, do what they tell you to do (unless you feel it is wrong as a parent, use your instinct!). Your child won’t have any sort of delay in their learning to walk or any other  ability if you do. Despite the  Habanero being in casts, he gets around just as well as any of the other babies in class. He stands just like they do and true to his age and gender still gets into everything!