Consultation with Dr. Kayes

July 31st was our consultation with Dr. Kayes, a pediatric orthopedic doctor at the Peyton Manning Children's Hospital at St. Vincent's Hospital in Indianapolis.  It felt like we had been waiting so long to talk to someone.  I was a nervous wreck before the appointment, but could not wait to get down there and meet him.

Up until about the week before, I had plans to go by myself.  That made me sad, as I already felt so lonely and overwhelmed by this choice, but it made sense.  Jay didn't need to take any time off of work that wasn't necessary.  However, after talking with Jay more about Oliver's feet,  he decided to take the afternoon off and we would take Oliver with us to see if the doctor would look at Oliver's feet also.  We weren't asking him to diagnose anything, but just wanted his opinion.  If he felt like something was wrong, we would come back for an appointment just for Oliver.  I prayed that he would tell us Oliver's feet looked good and that wasn't necessary.

I barely slept the night before the appointment.  I wasn't exactly sleeping much lately anyway, so that wasn't unusual.  Stress was really taking a toll.  The morning of our appointment, I took Oliver to his speech therapy and then dropped off Lucy with my mother-in-law.  Thanks to lovely pregnancy hormones I was so sad to drop her off.  I usually don't spend a lot of time away from her and I hated to leave her for the day.

Oliver and I came home and got Jay and headed to Indianapolis.  We had plenty of time which was nice since I wasn't exactly sure where we were going.  Once we got closer to the hospital, I realized I had been down there before (in college).  The hospital campus is pretty big but I recognized exactly where we were.  Thankfully there was a parking garage directly across from the entrance we were supposed to use, and the orthopedic office was right inside of that entrance.  Very, very easy.

We waited f.o.r.e.v.e.r.  Or at least it felt that way.  A friend of mine texted to see how our appointment went, and I vented about how we were still waiting.  We were in the waiting room almost an hour (we got there a little early, so probably 45 minutes past our appointment time) before we got called back.  I understand that doctors get behind, especially by that time in the afternoon, but I was such a nervous wreck that it was driving me nuts.  Plus, my back and my hips and everything else were hurting from the long drive down.  Cue the pregnancy crankiness.  Thankfully they had some pretty cool video games in the waiting area that Oliver enjoyed playing.

We finally got called back and the nurse asked us some basic questions.  Oliver was already starting to get wound up being in the room and climbing up and down on the exam table.  I could feel my stress level rising and I was just praying he wasn't going to be completely crazy during our talk with the doctor. We had explained to him how important this was and that we needed to be able to talk to the doctor.  We even let him bring in his Nintendo 3DS to hopefully keep him occupied.

Finally Dr. Kayes came in.  We introduced ourselves, and Oliver, and said that he was our first clubfoot child.  Oliver was sitting on the exam table with his shoes off, and right away Dr. Kayes started making conversation with Oliver and moving his feet around.  I kind of held my breath to see what he said.  After playing with them some more, he said Oliver's feet looked great! I think Jay and I both let out a sigh of relief.  I explained that he hadn't seen a doctor for awhile so we were hoping to hear that.  He had Oliver stand up and turn around and said although his right foot was a little tighter than his left that they looked great.  He was amazed by Oliver's treatment (no tenotomy, very early release from braces, etc) and asked a lot of questions about that.  He even looked at Jay's foot (Jay was wearing sandals) and asked a couple of questions about what we knew about his surgery and treatment as well.

Even though we had to wait awhile for our appointment, I felt like Dr. Kayes made sure that we had plenty of time with him.  He apologized that we had to make such a drive to get to him, and I kind of laughed and said, "Well, its either here to you or to St. Louis to see Dr. Dobbs...this is much closer."  I explained that I had been in touch with Dr. Dobbs, and Dr. Kayes said he had a couple of patients that he has actually sent to St. Louis to Dr. Dobbs for a second opinion.  He said he doesn't hesitate to get in touch with him if there is ever a situation where he feels he could use Dr. Dobbs' expertise.  He acknowledged that Dr. Dobbs is a clubfoot expert, and I thought it was great that he utilizes him when necessary.  Dr. Kayes was very humble, and kind.  He asked several times what other questions we had, and how he could help us feel comfortable with what to expect at this point.  I told him about how Oliver had KAFO braces, and asked if he ever used them.  He said no, not really, because of the long-term benefits of the bar and boots.  That brace is really the Ponseti standard, so I understand why he uses that.  I asked if we could get the Dobbs bar (which is hinged and the baby can move his feet independently instead of always together like with the solid bar), and he said we could.  That was good to hear.  He asked how we knew about the bar and boots if Oliver had used KAFO braces.  I had to laugh a little and say, "well, the Internet."  If he only knew how many hours upon hours I had spent researching!

During all of this, Oliver was much more...social, than I expected.  That's one way to put it.  He kept going up to Dr. Kayes and saying, "Hey! Look at my game, look at this level!"  and showing him something on his 3DS.  I wanted to crawl under my chair, and drag Oliver with me.  But Dr. Kayes took it all in stride.  He would smile and even ask Oliver, "Oh yeah?  Let me see that again."  He was so nice and easy-going with Oliver that it really put me at ease.

The treatment Dr. Kayes described was pretty much exactly what I expected.  He said just to give him a call after the baby is born, and we'll set up appointments.  The first cast will go on a week or two after he is born; whenever I feel up to making the trip.  We'll change out casts once a week for several weeks until the feet are positioned correctly.  There's a good chance Max will need a tenotomy, but I'm still praying we can avoid that like Oliver did.  If he does need it, it'll be an in-office procedure and not in an operating room. I was relieved to hear that.  A final cast will go on after that and stay on approximately 3 weeks.   After that Max will start wearing the bar and boots brace.  The first three months of brace wear will be 23 hours a day, 7 days a week.  After the first three months, we will slowly wean him down: one month 20-22 hours, one month 18-20 hours, one month 16-18 hours and one month 14-16 hours. Eventually he'll get down to just wearing them at bedtime until he is about 4 years old.  That is the part that I really struggle with.  I can't imagine having a child in braces at bedtime for that long when Oliver was done so early.  But I can't let myself go there.  Not yet.  Max isn't even born yet; I can't let myself imagine him as a toddler in braces at bedtime.

I left the appointment feeling much, much better than I expected.  I'll admit, I went in with a "this guy is going to need to impress me" attitude.  I really looked at the appointment as something to check off my list to say I had looked at all of our "local" options before deciding that we needed to see Dr. Dobbs in St. Louis.  How we were going to afford to get there, I didn't know.  How we were going to arrange childcare, I had no idea.  But I didn't expect to like Dr. Kayes, to be really honest.  I was surprised at how much I liked him and felt at ease with him.  Jay and I both felt comfortable with him, and I was so glad that Jay had been part of that day's appointment.  I needed his input.

I left the appointment feeling like a slight weight had been lifted.  Finally, we had a doctor.  I still had this nagging feeling that I wished we could be making the trip to St. Louis.  I really liked Dr. Dobbs, and I knew he was one of the very best.  But logistically, this made so much more sense.  And if we ever feel like we need some extra help or attention, we know we can go to St. Louis.  

After the appointment, I was able to meet up with a friend who lived in Indianapolis and had a bunch of nursing and baby stuff for me.  We had actually never met in person before despite being in touch pretty much daily on facebook, text messages, etc.  Amal was so super sweet to wait for us during our appointment.  It was lovely to meet her, and I hope that during some of our many other appointments we will be able to see her again.

The drive home was exhausting.  Physically I was in a lot of pain...Jay had gone into work at 2:30 that morning and worked 8 hours before leaving so, understandably, I did the majority of the driving that day.  I called both of my parents to let them know how our appointment had gone, but I wasn't as talkative as I normally would have been because I was just so drained.  It seemed like two months worth of stress, exhaustion, and anxiety had caught up to me.  We had hoped to make it home in time for Oliver to get to play in his soccer game, but we definitely did not.  I couldn't wait to pick up our Lucy girl and just get home.

I went to bed that night with somewhat of a clear mind for the first time in awhile.  I posted this as my facebook status:

An exhausting day, both mentally and physically. But a very good one. I'm so thankful for all the prayers and messages we received today. I feel so much relief that today is over! Two months ago I was devastated with the news we had just received and for the first time since then I am going to bed with some peace of mind. Thank you Lord.


I expected to wake up the next day and feel so much better.  But to be honest, the next day I felt awful. Physically, I was exhausted and hurting all over.  It was like I was forcing myself to just move and take one step after another.  Mentally it was like all I could think was very basic thoughts about what needed to be done and paid attention to in that very moment.  The kids and I got through the day with me functioning on a very basic "need to do it" level.  I think the stress, anxiety, build-up, fatigue, and worry of the past two months had left me stripped of everything.  I wanted to feel relieved and happy about the day before but felt very numb.  It had all certainly taken its toll.

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. 

Quick Overview of Clubfoot and the Ponseti Method

When I mention that we have a son who was born with clubfoot, or when I say that we are expecting another baby with the same condition, many people ask what exactly it is.  I wanted to do a quick post here to give some basic information about what clubfoot is, the treatment for it, and a bit about our family history with it.  Forgive me for not being too specific or scholarly with this...my history major background is cringing at the lack of citations and proof reading. :)  One thing I have learned is there is a lot of variation with how things can happen with clubfoot.  Each case is unique.

Most of my information has come from Ponseti International website.  You can visit it here:  http://www.ponseti.info

Clubfoot is a treatable birth defect that occurs in approximately 1 in every 1,000 live births.  About half of all of those affected with clubfoot have it in both feet, known as bilateral clubfoot.  It occurs in males twice as frequently as females.  I find this especially interesting since Oliver had bilateral clubfoot, Lucy wasn't affected, and now we have another son on the way who is expected to have a right clubfoot.

Physicians have observed that fetuses that develop clubfoot start with a normal foot and then the foot begins to turn inward around the third month. Most children born with clubfoot are not missing any bones, muscles, or connective tissue. It is a congenital condition, meaning that when it occurs it is always present at birth. (http://www.ponseti.info/clubfoot-and-the-ponseti-method/what-is-clubfoot/learn-about-clubfoot.html)

It is not known exactly what causes clubfoot.  While it is not always genetic, there is a family history in some cases. My husband, Jay, was born with clubfoot.  He had casts and an extensive surgery on one foot. 

Thankfully, the surgery that Jay had as a baby is no longer the norm for treatment of clubfoot.  Jay has a lot of pain in that foot, especially if he is on his feet for a long period of time.  The "gold standard" for treating clubfoot now is called the Ponseti method. 

The Ponseti method is mainly non-surgical.  It is recommended that it begins within the first week or two after birth to take advantage of the baby's flexibility.  The baby's foot is turned into a specific position and casted.  The casts are then changed every 5-7 days.  Most clubfeet can be corrected with 5-7 castings (sometimes less, sometimes more). At the end of the castings, a minor surgery is usually needed to lengthen the baby's tendon(s).  This is called a tenotomy and the baby will be casted again afterwards. This cast is left on for a longer period of time (usually 3 weeks, although this can vary).  Some doctors do this surgery in office with a local anesthetic; others prefer to do it in an operating room under general anesthesia. 

After the last casts come off, the baby wears a brace.  Called "bar and boots", this is a brace that keeps the baby's feet in place.  A pair of "shoes" (special orthodic shoes called AFOs) is placed at a specific degree keeping the baby's feet turned outwards and set onto a bar.  There are different types of bar and boots braces.  Some are a fixed bar, in which the baby must move their feet simultaneously.  Others are a hinged bar (called a Dobbs bar, developed by Dr. Matthew Dobbs, one of the nation's leading experts in clubfoot) and allows the baby to move their feet separately.  It is recommended that the child wear the brace for 23 hours a day for the first 3 months and then slowly work down to wearing the brace just while they are sleeping.  Children usually wear the brace during the night for up to 4 years (sometimes more) to prevent relapse.  This website shows the Dobbs bar and some adorable children wearing them! http://www.dobbsbrace.com/
 
Oliver's treatment seemed to follow the Ponseti method except for the bracing.  He was also one of the few who did not need the tendon surgery.  Oliver wore KAFO braces and was done just after his first birthday.  As I read about stories of relapse, I am amazed at how God took care of our little guy.  I'm not sure why our orthopedic doctor at the time varied from the Ponseti method when it came to Oliver's bracing treatment.  I'm just thankful it all worked out.

While it is said that the Ponseti method is not exactly difficult to learn, it is very precise.  We live just outside of a major city in Indiana that has a large orthopedic practice.  However, there are no orthopedic doctors sub-specialized in pediatrics within this group, so none of them know how to treat clubfoot.  Each cast has to be set a specific degree and variation.  The doctor that we saw with Oliver is no longer practicing due to health issues, so we are in the process of looking at our options.  In about a week and a half I have a consultation with a doctor about two hours away.  I have also been in touch with Dr. Dobbs who is located in St. Louis.  After my consultation with the doctor who is located in our state, Jay and I will discuss what option would be best for our family.

It never ceased to amaze me how happy this little guy was. He has brought us so much joy!