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Minnesota Babies
katminks
member
Clubfoot Treatment with Gillet's and Issues Regarding Daycare
katminks
member
Hello,
My baby boy was diagnosed with bilateral clubfoot at my 22 week ultrasound. I met with my pediatrician today to discuss a referral to an orthopedic surgeon. He suggested an ortho group that works at Gillet's Children's Hospital. Has anyone worked with them with your own baby with this disability?
We discussed the baby being treated right away at a one week old. Which I thought is great that they are proactive. I meet with them to discuss how treatment will happen at birth before he is born. However in reading articles about clubfoot I see there may be more steps involved than just the casts. Steps that involve cutting tendons and recasting as well as braces until he is 4 or 5? IS that common to do the braces and the casts?
The second part to my question is about daycare for my son. I am looking into daycare both home daycare and care centers. It didn't dawn on me today that my child is considered disabled (mostly because the doctor kept referring to him as that). When I am looking at daycare and estimating costs do I need to be letting the care provider know about this right now and if so does it change the cost because my child may require special "handling" given the fact that he will be in casts and braces? How much has this changed your daycare costs if you have dealt with this issue?
Any advice or experience with this is very much appreciated.
Thanks
KM
This discussion has been closed.
Re: Clubfoot Treatment with Gillet's and Issues Regarding Daycare
Gillette will be a wonderful place for treatment of clubfoot. One of the practitoners there did a fellowship with Ignacio Ponseti, one of the pioneers of clubfoot treatments... in fact, one of the treatment methods of clubfoot is the Ponseti Method. You will be in good hands there.
Another local place to try is Shriners in Mpls. They deal only with orthopedic issues at this hospital and would be a great place for your baby as well.
As far as casting and braces, it probably depends on the severity. The serial casting pretty much always happens as a treatment. I think depending on how that treatment goes, they may procede with 'Dennis Brown splints' which are shoes with a bar between them. Not quite sure what they do beyond that, but might procede to Ankle Foot Orthotics (AFOs)
Good luck!
Congrats on your baby boy!!
My DS was born with a right clubfoot and we initially started with treatment at Gillette. It was a terrible experience and I wouldn't recommend going there. The providers are arrogant and act like they know all when it comes to the Ponseti protocol. They also don't follow the protocol 100% and that is a huge red flag that they don't know what they're doing. They also have a high relapse rate at Gillette.
When DS was 12 months old we started going to the University of Iowa Hospital for his clubfoot treatment (they have a clubfoot clinic there, since that is where Dr. Ponseti worked). It's about a 4.5 hour drive for us but it's totally worth it.
The process for treatment is typically 5-7 sets of casts that are changed weekly. Each time they slightly stretch the foot outward to slowly stretch the tendons. When it's time for the last cast, a tenotomy is often times needed to allow the foot and tendons to lengthen so that the foot can fully be corrected. Then the last cast will be put on for 3 weeks. Once that cast comes off, then your son will get a brace (boots and bar; aka Ponseti brace) that will need to be worn 23 hours per day for 3 months. After three months, then the time in the brace is decreased to 18-20 hours daily for another 3 months and then after that then it is recommended to have the child wear the brace during nights and naps until they are 4-5 years old. The reason for this is that then the chance of relapse is less than 10%. Relapses tend to occur when kids grow rapidly.
Here is a great website with a lot of information about clubfoot and treatment. https://www.ponseti.info/parents/
I also recommend a yahoo discussion forum called: No Surgery 4 Clubfoot : https://groups.yahoo.com/neo/groups/nosurgery4clubfoot/info
Try not to think of your child as having a disability. He will be able to live a normal life like his peers. Clubfoot doesn't affect a childs developmental milestones.
Daycare costs shouldn't be extra because he has a clubfoot. They won't really even need to mess with his brace while he's there. You will still be able to do everything normally like nursing (if you choose to), babywear, etc... And I almost think it was easier to change a squirmy baby with the brace on vs not on because you just hold the bar up.
I know this all sounds overwhelming, but you will get through it. My only suggestion is that footed sleepers will be more difficult to wear. My son could fit his legs in with casts, but once he was in the brace, we just had to cut the feet off of the sleepers or make a slit in them for the brace/bar.
Feel free to message me if you have further questions. I can be reached at my screen name at Hotmail dot com And for sure check out that discussion forum. There are a lot of us moms from MN in that group!!
Above all else, trust your instincts!!! Your child is not "disabled" yet, your child is still developing and you NEVER know once your child is born what their needs will be or even potentially won't be. This is true of any child and delivery! A lot can change in the next weeks/months, and obviously keep an eye on it, but don't label your LO as "disabled" just quite yet. As my OB pointed out with both pregnancies, none of those issues change the level of care you or your LO get, if a problem occurs, you deal with it when that happens. Genetic and even u/s interpretations can be wrong, look at how many have been told they were having one gender of child only to find out it was the other.
That said, it's great that you're researching ahead of time. Put some time into researching the different treatment options available from a clinical perspective. Until LO is here, you won't know which will be the best course of action but at least you'll know who the best is to link up with depending on which is the best way to go. I like the suggestion from a PP on Shriner's since that's what they're known for worldwide as a specialty.
The big thing I'd be concerned with lining up is the potential time off from work if there is an issue. Some employers are better about this than others.
Good luck!