Our Search for a New Orthopedic Doctor

After I found out that Oliver's orthopedic doctor was no longer practicing, I immediately went into overdrive mode to find a new doctor.  Finding out that Dr. Cummiskey wasn't going to be our baby's doctor turned a difficult situation into one that became almost suffocating for me.

If I was angry that our baby was going to have to go through this, I was furious that we had this struggle thrown on top of everything.  I felt completely overwhelmed and burdened by the need to find a new doctor.  I knew that Oliver's treatment had worked wonderfully for him, but that most doctors would do things differently.   I had never heard of another clubfoot baby having KAFO braces (they all seemed to have the awful looking bar and boots brace) and they all seemed to wear them for a much longer time.  Suddenly my one comfort of knowing what to expect was stripped from me.

When I talked to my midwife after the ultrasound that revealed clubfoot, I said I didn't really have a need or desire to see the perinatologist that we saw with Oliver to look at the foot again.  I knew what clubfoot looked like, and I know what I saw.  All he could tell me was what I already knew.

Once I knew we would need to see another doctor for the baby's treatment, I asked for an appointment with Dr. Wheeler, the only perinatologist in our area.  I figured he would be able to give us a name or a hospital to look into.  Thankfully I was able to get in to see him the week after my first ultrasound.

I went to the appointment by myself.  I didn't know exactly what Dr. Wheeler would do; I half expected to feel like it was a waste of time.  But I'm very glad that I went.  They did another full ultrasound, checking everything out.  I was so glad to see again that our baby boy looked very healthy.  I was praying that God had healed the baby's foot and we could move on...but that wasn't the case.  The foot looked exactly the same.  Dr. Wheeler came in to look at the ultrasound and agreed that it looked like clubfoot.  He asked the tech if it was an isolated clubfoot (not related to any other condition that we could see), and she said yes.  He said how that was a very good thing, and I'm sure for him a clubfoot is mild.  Like I've said before, I don't envy his job.  I can't imagine dealing with the things that he sees everyday.  I only saw one other pregnant mother at his office while I was there, and I couldn't help but wonder why she was seeing Dr. Wheeler.  My heart ached for her just because she was there.

After my ultrasound, Dr. Wheeler had me come into his office to talk.  Basically, he said how awful it was that Dr. Cummiskey was ill and it still took him by surprise to think about it.  He said that it was a relatively new development, and he didn't have the name of another doctor to tell me. (Crap.)  That wasn't really what I wanted to hear.  He called someone while I was there and they said that basically they were referring anyone dealing with clubfoot to Indianapolis to either St. Vincent's Children's Hospital or Riley Hospital for Children.  Dr. Wheeler said that if it was his child, he would go to Riley...but that he didn't know any of the doctors.  Just that the hospital is really good and he would trust in their care.  He gave me a website to look at that listed their doctors and said to look for an orthopedic doctor that was specialized in pediatrics.  He said it was sad that in the second biggest city in the state (one that has a large orthopedic practice), that no one was sub specialized in pediatrics and knew how to treat clubfoot.  I tried to be thankful that he believed there was someone in Indianapolis that we could see; a two hour drive was far from ideal but I knew it could be worse.

From the time of my first appointment that showed clubfoot until the time that I finally had a consultation with a doctor in Indianapolis was exactly two months.  I spent every day of those two months on the internet researching.  Hours upon hours researching.  Because I knew that our baby would probably have different braces than Oliver had, I felt like I needed to research the entire Ponseti method again.  I could barely sleep some nights. I'd wake up thinking of something else to look up.  Having the internet on my phone was as much a blessing as a curse during this time. Just when I'd try going to bed I'd think of something to research and end up being awake for another two hours as one search led to another.   I felt like I didn't have a choice; my baby needed me to find a doctor.  I found support groups and other mothers who had been through this as well.  Those were both good and bad...it was nice to talk to others, but at the same time, they were often struggling with things that I didn't even know could happen.  Relapses? Nighttime braces at ages 3, 4, 5, and older? Pressure sores? I began to feel buried under all the possibilities of what could go wrong.

In the early spring, we had Oliver evaluated for some physical therapy.  He was doing a lot of tiptoe walking and in toe-ing.  He seemed to be doing well, but the more I researched about relapses the more obsessed I became with his feet.  Was he relapsing?  Did he walk on his tiptoes out of habit, or was his tendon too tight for him to walk normally?  Should he have had the tenotomy as a baby?  Did he need it now? Oh my gosh, what if Oliver needed surgery and was in casts? I couldn't carry him or handle him in leg casts when I was this pregnant!  In my mind I had gone as far as to figure out when I would be able to schedule a surgery for him so that I didn't have him and the baby in casts at the same time.  I was a total mess.  We decided that once we found a doctor for the baby, we would have Oliver looked at as well.  The whole thing just made me sick.

After doing research on the website that Dr. Wheeler gave me, I finally called Riley and St. Vincent's to get consultations set up.  I was hoping that I'd be able to get into both on the same day to minimize driving time.  I called St. Vincent's first and asked to get in to see Dr. Kayes.  He was the name that a couple of moms that I had talked to online gave me so I figured I should call him.  I really didn't think we'd end up going there since Dr. Wheeler had said Riley was where he would recommend.  But I figured I should consider all our options to make sure we were making the best choice.  The receptionist that I talked to was nice but not very personable.  I wouldn't be able to get in to see him until July 31, and that seemed like an eternity away.

Then I called Riley Hospital.  The ladies that I talked to were extremely friendly and compassionate about what we were facing.  But I was very surprised to find out that only one doctor would meet with me prenatally.  (And it was a doctor that I had heard not so great things about, and I already knew I wouldn't go to him.)  I was so surprised that they wouldn't see moms during pregnancy.  When I asked why, the receptionist said that the doctors didn't see a reason to because there was nothing that could be done until the baby was born, and sometimes ultrasounds were wrong.  I thought that was so strange.  The receptionist that I talked to was able to give me a lot of information about all of the doctors at Riley that treated clubfoot. (They each did things a little differently...some did the tenotomy in office, some did it in an operating room; some did hard plaster casts and some did soft casts.) They offered to send me some information on clubfoot, even though they knew we already had been through this with our older son. They were so extremely helpful and I was really leaning towards going with them.  But I couldn't get over the idea that I was not able to meet with a doctor before I would be bring my baby to him to be treated. I felt like I really wasn't making much progress.

In the midst of all of this, I learned of an excellent clubfoot doctor in St. Louis, Dr. Matthew Dobbs.  At first I was overwhelmed and emotional about the idea that maybe we would need to travel that far to receive excellent care.  I had no idea how we would afford it.  Jay couldn't take that much time off of work to go with us.  If it was a one time surgery or even a surgery and then follow-up visits, it would be one thing.  But I was overwhelmed at the idea of doing it weekly with a newborn and taking care of two other children.  After I had Lucy, I went back to doing everything so quickly that it delayed my recovery by a lot. Physically I felt awful for weeks after I had her.  I had been determined that I wouldn't do that again, and would spend the first several weeks of my next baby's life not running around like crazy.  I knew life would go on and it wasn't like I was going to not leave the house; but I was going to respect what my body had been through and not do anything I didn't have to do.  Obviously that all went out the window when I realized we would be dealing with clubfoot and driving to Indianapolis each week...but St. Louis???

I checked online and it was about a six hour drive.  That didn't count in numerous stops with a newborn.  Breastfeeding in the early weeks takes forever...I knew each stop for the baby to eat could last at least an 45 minutes to an hour or more.  I would most likely have to go by myself most of the time and the thought exhausted me.  I knew Oliver would be ok staying with someone else if I needed to be gone overnight, but Lucy...Lucy would not do so well.  She would be about two when I would need to start travelling and I have never been away from her overnight.  She doesn't sleep well anywhere but her bed, and with Jay's work hours it was going to be hard to be able to have her sleep in her bed but then up and ready for someone else to help with her during the day by the time Jay was gone for work.  UGH.

And then I started feeling guilty...if Dr. Dobbs in St. Louis was the best, how could I deny our baby that?  How could I not be willing to make sacrifices for a short period to time to ensure that his care was absolutely excellent?  People from around the world travelled to St. Louis...how could I complain about a few hours? I would see other clubfoot moms posting about the travel they went through to get to Dr. Dobbs because "only the best" for their baby.  It just made my stomach hurt--how could I want anything less??? I actually got in touch with Dr. Dobbs via private message on his facebook page, and he didn't have any recommendations for doctors in Indiana but was so extremely kind to talk to.  It made me want to see him even more.

I knew that Dr. Cummiskey had closed his practice, but on a whim one day I decided to try to call his office anyway.  There was a recorded message from his nurse (and oh, when I heard her voice it seemed impossible that it had been so long since we had seen her) saying that his practice had closed but if we had any questions or needed records to call her at her new office. So I called and left a message, telling her who I was and that I was wondering if Dr. Cummiskey had any recommendations for a new clubfoot doctor.

Nurse Deb called me back the next morning, and it was so, so good to talk to her. She remembered Oliver and we talked for quite awhile.  She said that they were recommending for patients to go to Dr. Kayes, the doctor I had set up a consult with at St. Vincent's hospital.  I was a bit surprised, and told her I had thought maybe Riley would be our best bet.  She said that they actually hadn't seen the best results come out of Riley and she was also shocked that their doctors would not meet with me prenatally.  She had a lot of good things to say about Dr. Kayes.  A few weeks later I stopped in with the kids to see her and get Oliver's records.  It brought back so many memories to see this sweet nurse who had been there with us during Oliver's care. 

After talking with Nurse Deb, I felt like if we stayed with a doctor in Indiana, we would see Dr. Kayes and not a doctor at Riley Hospital.  I still had doubts about Dr. Kayes, though, and it was hard for me to not think about how we could make the trips to St. Louis work.  I had heard of an organization called Angel Flights, and found an organization in Indiana called Lifeline Pilots.  Its an organization that flies people to where they need to go to get medical care.  There's an application to fill out and not everyone gets accepted.  I figured we would go see Dr. Kayes and then I'd come home and see if we could get to St. Louis.

Thankfully, our visit with Dr. Kayes in Indianapolis went much better than I expected.  I will do a full post soon.  The burden of finding a new doctor has been unexpectedly heavy.  I felt (and to an extent, still feel) an enormous amount of pressure to make the right decision.  I just pray that we have made the right one.



*****

One more quick thing, unrelated to our search for a new doctor.  But I recently found this ultrasound image while looking online, and wanted to share it.  This is from another blog of a family who has a clubfoot baby.  Unfortunately, I do not have ultrasound images of either Oliver's clubfeet or Max's clubfoot.  I really, really wish that I did.  But I wanted to share this so that people can see what we saw on the ultrasound.

Photo found on google search via http://russellsfeet.com/about/

See the leg bone, and the way the foot turns in instead of extending straight forward?  The foot turning in like that indicates clubfoot.  With Oliver, both feet turned inwards and we could see that via ultrasound.  With baby Max, his left foot extended straight out from his leg, but his right foot turned in.  As soon as I saw our ultrasound and saw his foot look very similar to the one pictured above, I knew he had a clubfoot.