Birth defects/foot deformities... pediatric surgeon that specializes in congenital issues

My DD#3 who is currently 13 months old, was born with both of her feet "pushed up", such that her toes were touching her shins. Despite 14 sono's during my pregnancy, possibly more, I had no clue about this during the pregnancy.

In the hospital a doctor in Huntington was recommended. Once out of the hospital, my pediatrician at the time unknowingly recommended the same doctor in Huntington. Since then, we had to switch pediatricians for insurance reasons. Regardless, the doctor in Huntington wanted us to go see someone at Hospital for Special Surgery in Manhattan but the doctor there would not take our insurance and just a consultation was $1000! The Huntington ortho found someone out of state who specializes in children's foot problems at one of the children's hospitals. After consulting with a pediatric Neurologist, an MRI of the lower spine and some preliminary genetic testing, the out of state doctor at in felt that we should just continue physical therapy, and wait and see, but he is leaving the hospital and our case would be referred to someone else. It's a tough drive on our family for many reasons for a doctor we know nothing about.

The 2 doctor's both, out of state and in Huntington both consider the condition Talipes Calcaneovalgus, but a severe case since at 13 months old it has not resolved itself. She was casted from age 2 weeks through age 10 weeks. She has gone through 2 different types of braces. These doctor's feel wait, do PT and if anything minimally invasive small cut of the tendon in front of the foot may resolve the issue. No rush on surgery.

Our new pediatrician suggested someone at Stony Brook. I met with him, he felt that her problem is something called Congenital Vertical Talus... requiring another MRI of her Thoracic and Cervical spine (with sedation) and very invasive surgery as soon as possible. The surgery involves rebuilding the foot and using pins and wires. I read up on the doctor and asked a local mom's facebook page, he gets great reviews... for someone's football injury, for another gymnastics injury, etc.... No one reported using him on a baby or for a birth defect/deformity.

We were cut off from PT through insurance and are going through the evaluation process for the second time for Early Intervention. She was denied at 4 months old, but now she is missing milestones... cannot sit herself up, cannot crawl, doesn't pull up to stand and obviously isn't even thinking about walking. Cognitively she is fine, babbles, communicates well, not cranky, very alert, sleeps and eats amazingly well. However, Congenital Vertical Talus, if that's actually what this is, is usually just a symptom of a genetic defect and often accompanies mental retardation.

So if you are still reading, lol, if anyone knows of stellar Long Island Orthopedists who are known to perform these more specialized procedures or if your LO has undergone such surgeries for a BIRTH DEFECT, please share your physician and your experience. In the meantime, I am considering going out of pocket to HSS. I'm becoming very uncomfortable now that milestones are getting missed.

Message edited 6/1/2015 2:41:56 PM.

Re: Birth defects/foot deformities... pediatric surgeon that specializes in congenital issues

Personally, I would pay out of pocket for a consultation with HSS. Have you tried Cohens and CHOP?

Birth defects/foot deformities... pediatric surgeon that specializes in congenital issues

My daughter was born with club foot. She saw Dr. Barsi at Stony Brook orthopedics. He specializes in pediactrics and I loved him. He was very knowledgeable. She was seeing Dr. Wesley Carrion from when she was born but I was not a fan of his bedside manner and switched pretty quickly to Dr. Barsi. He is fantastic. When my daughter was first born the residents who worked right under Dr. Carrion told me she would never walk or crawl well they were 100% wrong and she did hit her milstones. I would probably try and contact the Dr. at HSS directly and see if they can do anything about the $1000 consultation. Also try other specialists in Manhattan. I hope you find someone you are comfortable with and happy with.

Birth defects/foot deformities... pediatric surgeon that specializes in congenital issues

I don't have experience with surgery but both my girls had hip dysplasia and we saw Dr. Wallach at SB Ortho. He has great reviews but I didn't love the way was always in and out very quickly. I did want to share that I belong to a fb group for hip dysplasia and a ton of the kids do go through surgery. I always hear great things about CHOP on there. If you want, I can ask for more local recs from the parents there.

I also wanted to say DD1 was not doing any of the milestones you mentioned when she started with EI at 13 months. Within the first 6 months she was practically caught up and barely even qualified to continue PT so don't get too down about that stuff. She should definitely qualify at this point and will likely catch right up. Even the kids I see in casts on FB are reaching new milestones in the meantime. She'll get there!

Birth defects/foot deformities... pediatric surgeon that specializes in congenital issues

My advice would be try Cohens if you want to stay local otherwise go straight to CHOP

Birth defects/foot deformities... pediatric surgeon that specializes in congenital issues

my DS had major surgery for 2 birth defects. his surgery was at Morgan Stanley Children's Hospital in the city and all of his surgeons (there were FOUR) were amazing. i would definitely suggest going there for a consult. they took our insurance. if you have any questions, FM me any time!

Re: Birth defects/foot deformities... pediatric surgeon that specializes in congenital issues

Honestly for something like this I would forgo vacations, Christmas gifts etc for a while and go straight to HSS or Columbia. I have a son with special needs including orthopedic stuff. Some specialists I see around here, but for for the more serious/obscure/surgical stuff I go straight to the city. You are very wise to want a surgeon specializing in that particular surgery.

HSS is known for being a "fancy" hospital and not taking insurance but COlumbia has a VERY good ortho group and they take a lot o insurances. Good luck !!!

Eta - Columbia is the same group as Morgan Stanley mentioned by pp. it's New York Presbyterian/Morgan Stanley children's hospital. Columbia is the old name but many still refer to it. We see David roye who is amazing. Vitale, hyman are some other very well known ped orthoS there. The cohens group is "eh" on reputation, a lot of them are young. We looked into them for my son but were strongly urged by a lot of people in the know to go to Columbia/Morgan Stanley.

Message edited 6/1/2015 7:30:09 PM.

Re: Birth defects/foot deformities... pediatric surgeon that specializes in congenital issues

I do not have personal experience but I am a pediatric physical therapist.

I would have her see someone at hospital for special surgery in the city. Some of the kids I treat have see dr blanco from hss. He is great! Really takes his time talking with the parents etc. he has an office in Uniondale I think on Wednesdays. He specializes in spines so there may be a doctor that is more specialized in the foot/ankle. When you call I would explain her possible diagnosis and double check that dr blanco is the best for her.

Also I would call early intervention and have her re evaluated. If she is 13 months and not sitting/crawling she will qualify.

sorry this has been so stressful!
Fm me if you have any other questions

Eta: sorry I missed the part about them not taking your insurance. The last time one of my kids had an insurance issue they told me the doctor couldn't see them at the long island office but they could be seen in "clinic" in nyc

Message edited 6/1/2015 8:50:25 PM.

Re: Birth defects/foot deformities... pediatric surgeon that specializes in congenital issues