Overwhelmed & looking for advice on treatment options

Brenda - posted on 10/12/2011 ( 7 moms have responded )

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First an introduction and some background on us: I am 21 weeks and 1 day pregnant with a boy. Our son is due in February, 2012. We had difficulty conceiving and finally had success with our 4th IVF attempt at Vitalab Clinic. I am 26 years young. I have Hashimoto's disease, PCOS, Endometriosis (which was surgically removed) and issues with my eggs thus the need for Fertility Treatments. I've always been healthy and active and maintained a BMI of 19-21. My husband is 27 years young and extremely healthy and active and perfect in every way.

I had my 20 week Fetal Assessment Scan (FAS) last week. Everything seems normal and healthy in our baby boy except the Doctor suspects he has clubfeet. We went for a second opinion and a 4D scan this week and it was confirmed, it seems like both his feet is effected. Nothing else were found to be problematic.

We're overwhelmed. I've found 2 doctors that are highly recommended in my area (Gauteng, South Africa) Dr Eltringham whom is very pro-ponseti method and Dr Colyn whom is very pro-surgical intervention. We're seeing both in person at the end of the month.

We're trying to be proactive and have all the answers by the time of my son's birth so we can give him the best possible treatment. However we're overwhelmed. Both sides are so adamant that their method is best so it's really hard to know which is really best. I would love to hear advice and feedback from you ladies please. (If any of you are from South Africa I would love to hear from you too!)

Questions:
1. What method do you believe is best: ponseti or surgery?
2. Could I have done anything to cause this? Only family we know who have had clubfeet was my mom's cousin's son.
3. What is the chances that he'll have other issues if the rest of the FAS was clear? I just want to be prepared to best help him.
4. What type of timeline are we looking at considering the treatments?

Sorry for the long post and thanks for reading!

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7 Comments

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Alexandra - posted on 03/26/2014

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2 you did not di anything to cause it most of the time it is a result to little room to move in the womb 4 probably the rest of his life because if u dont keep up with the exercises it can return to the way it was at birth would yku rather let him get xasted and possibly exolore physical therapy or end up needing several surgies because he will continue to grow

Alexandra - posted on 03/26/2014

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Hi my name is alexandra my daughter was born with arthrogyposis wich affects her arms, wrist ,knees and feet (club foot) i have been working with doctors and physical therapist since she was born she had the ponseti casting on her feet as the very first thing they tried it did help quite a bit but they can not grt wet so that means spounge baths pretty much she had that for about a month and then i had them switch to afo's ( ankle,foot orthodics.) which are removable brases i would take her afo,s off and perform the exercises on her feet that the doctors showed me and then tape her feet in order to hold a dorsiflextion and put the braces backon i think that worked very well because i was having to phsically do exercises on her foot to improve it also look into kineseo taping im not an expert o it but i recebtlt started doing it to sophia and its helped tremendosly i will tell you what the doctor told me about choosing survery opposed to the other methods is that u just want someone to fix your child you donr want to really have to do anything sophia was born in a lotus position with her legs completely hoojed and now 19 months later she is using standing/walking splints the doctors told me shed never crawl shed nevet scoot nevet walk ect while she doesnt crawl she can scoot and stand and is getting vety close to walkin

Dannyssis2000 - posted on 03/08/2014

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I know how you feel. I was devastated but I wouldn't ask for anything else. I researched a lot too. I have found through talking to many different people and sources that not surgical is the best way to go. My little boy is 6 months and wears his ponseti boots and bars without a problem. If I have another like him that's the sane treatment I would follow.

Marie - posted on 10/16/2013

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Hey there,
My son's feet were turned in at 90 degree angles when he was born. We went to a great doc when he was just a week old and started casting. She was very good and he was able to get out of casts in just four weeks instead of the standard 6-8 weeks. She said that by catching it early enough/ aggressive enough you can often prevent surgery. He went into the articulated ponseti brace right away and aside from getting leverage on everything he can find to pop them off, he has done great with it. At four months old we were able to move to only needing it at nap time and night time and he is still progressing. The things have made him wicked strong and is sitting up on his own and almost crawling.

There is no definite reason as to why. I've heard genetics mostly.

Normal timeline is
4-6 weeks casting
2 months full time ponseti
after that until age 2 or 3 years- night time and nap time ponseti brace

Ankha - posted on 11/15/2012

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Hi, I think I saw you at Dr. Eltringham's this Tuesday. My little girl came in to take her cast off after her op 6 weeks ago. I would still go with the Ponsetti method if I had to do it all over again. Surgery is only done if necessary and even though castings and wearing the shoes feels like forever, it is better than just to cut. I believe treatment is 4 years,follow ups there after and if all goes well it will stay like that, otherwise, as in our case, my daughter stopped wearing the shoes at age 4 (May 2012) but started to relapse and had castings again not successful so we had the op 1 Oct. Good luck with everything, you did nothing to cause this. If all else is normal, your little boy will be stronger, Alyssa sat and balanced with the shoes 3-4 months, she could pull herself up from lying on her back into a sitting position and at 9 months she was walking and running soon there after. If people r not familiar with clubfoot, no one will know when our kids aren't in a cast or wearing the shoes. Hope this helps.

Stephanie - posted on 12/29/2011

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sorry about your little boy. my just turned 4yrs old son was born with bi lateral club feet and we didnt find out until he was born, so we were shocked. we did serial casting, then when he was a month or so we did the surgery where they nick the achilles tendon then cast them again. he then had serial casting for 3 months. after the casts he wore the ponseti bar. we have been very pleased with the outcome, if you didnt know he was born with clubbed feet you wouldnt know. when you have the surgery with an infant the achilles tendon grows back normally. if you wait until the child is older, they have more complications and the surgery is much more complicated. we were out of the hospital in one day. hope this helps. good luck.

User - posted on 10/24/2011

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My son was born 7/21/11 with both of his feet clubbed and we researched treatment methods heavily before we chose. We chose the ponseti method hands down. Most people we spoke to that had surgery have issues with scar tissue and ongoing pain, while the ponseti patients had alot less complications. The earlier you start the casting (while the bones are soft) the better the results. My son got his first set of casts at 5 days of age. There is nothing you did that caused the clubbed feet. We had every genetic and prenatal test done that was offered except a amnio and our son has no other health issues besides the clubbed feet. Our little boy is perfect in every other way and actually advanced when it came to smiling, rolling over, cooing, etc. If I were in your shoes I would try the ponseti method before considering any surgery. Ponseti has to be done on a certain time line in order to be successful. Surgery can wait.

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