Friday, October 28, 2011


The lesson of the week is to not assume anything.

This is the week I decided to tackle all of our insurance options and have a roadmap set up for my son's care for every route our family could possibly take.

Route 1: Paying for care out of pocket
I don't even remember the exact numbers for everything.  My husband told me the numbers a few days ago and I started hyperventilating instantly.  It came out to be around 300-400 per visit and a couple grand for the tendonectomy.  In all it was in the 6,000 range just to get his foot corrected and his first brace.

Route 2: Deferring treatment till my new Aetna PPO takes effect on 1/1
My monthly costs are $250 for my son and I to be on this insurance.  I can see any doctor that has a contract with Aetna and I don't have to rely on a referral from a PCP (primary care physician).  The only downside of this option is that if I don't go back to work I loose this insurance.  My maternity leave ends late March/early April depending on when he decides to come.  This means I only get the treatment that I want for 3-4 months unless I go back to work.  Oh and the braces are not covered (about $300 each new pair of shoes).  This option then leads to Route 2 option A, option B, or option C.

Option A: Transfer to my husbands work insurance if I decide not to go back to work.
This seems like a perfectly acceptable option.  However he is currently signed up for an HMO which means when we switch over we are under the restrictions of an HMO.  We would have to have a PCP refer us to an orthopedist.  Sounds easy enough right?  Find a pediatrician, let him know we have been getting treatment in LA for 4 months already, and he would make the intelligent decision to then refer us to Dr. Zionts since he has been the physician treating his case.  Not quite.  Unfortunately health care is not about getting the proper's about money and who you have contracts with.  Since we have a very large Children's Hospital here in SD we would be forced to see the doctors there who we have already researched and they DO NOT follow the Ponseti protocol even though they are both on the certification list.  We would only have to do this for 4 months until my husbands open enrollment which is July and goes into effect August 1st.  In July we have the option to switch over to his company's PPO and can return to seeing Dr. Zionts in LA.  Politics is only the first problem.  The HMO options is also very very very expensive.  We would have to pay $900 a month for family health care and then the PPO would then go down to $500 a month.  Needless to say....we will be very very poor with option A for about 4 months and would have to take some money out of savings.

Option B: Go back to work
There is a part of me that feels so selfish for not jumping on this apparent option.  If I go back to work I can keep the low health care cost, continue to see the doctors I want, and be making money for the family (not that much though) so we don't have to dip into our savings.  The only negative is that I would have to find daycare which is around $1300 a month here in SD.  Beyond the cost, the huge negative is that someone else would be raising my son!  Could I even trust another person to keep his brace on all day?  I know I am married to the most amazing man in the world when he told me "You carried that baby for 9 months; I can carry the family for 4."  That totally brought on the hormonal water works.  It has always been up in the air if I was going to return to work or not (even before the clubfoot diagnosis) but I at least always wanted the financial option to stay home if I wanted to.  I don't know if that is really there anymore.

Option C: Federal Cobra insurance
It is disgusting how much insurance company's charge for people to just be a healthy human being!  When researching this option, I found out my employer pays 87% of our insurance costs.  The cobra option would be $2,000 a month for my son and I.  Needless to say this really isn't a option.

So what is the verdict?  I have no idea.  I guess I can conquer that hurdle once it comes.  I'm just happy I know what the next year will look like for our family.  I hope this situation is easier for other clubfoot parents out there because it has been a nightmare for us.  It is hard enough to cope with the fact that your child has a defect that will demand constant monitoring and medical care but then add on to the package that the proper treatment you need will cause you to go broke is heartbreaking.  Ok, that is a little dramatic.  It's just so frustrating that all the saving my husband and I have been doing is going to go toward either paying someone else to raise our child or toward insurance costs that doesn't even allow me the freedom to get proper care.  I just need to remind myself that it is only 4 months!

Friday, October 21, 2011


This has been the week of consultations.  I've been very apprehensive of the Kaiser option but I decided to give it a shot.  Putting it lightly, I left the appointment extremely conflicted and confused.  Dr. Shoemaker was incredibly nice and confident.  He had training in clubfoot at the Scottish Rite hospital in Texas, which supposably has a good clubfoot program, and he claimed to only have a 10% ATTT surgical rate.  Still something just didn't feel right.  He deviated a lot from the standard Ponseti protocol.  He changes the cast every 7 to 10 days instead of every 5 to 7 and he only does night bracing until around 18 months.  I asked him about the contradictions and he made me feel like I was wearing a snow jacket in 60 degree weather.  He told me he found the "strict" treatment regimen unnecessary, "mean", and that it can impede on normal development.

One of the hardest lessons I have had to learn during this pregnancy is that sometimes I have to questions those I am supposed to trust.  I went to the nosurgery4clubfoot support group and asked for the advice of parents who have been there.  One of the best things another mom told me was to "trust your instincts."  As soon as I read that I turned to mush.  After a slightly hormonal breakdown, I knew I needed to contact Dr. Zionts in LA.  I emailed him at 5pm and received a response at 9:30pm!  Wow!  I was able to explain my insurance predicament and what treatment was being offered to me here in San Diego.  He  reassured me that I could defer treatment up till 12 weeks with no long term problems and that he would forward my number on to the billing department to start going over options.  My husband got a call at 5pm the next day from the UCLA orthopedic hospital.  Debbie was so nice and kind on the phone.  She is helping us figure out cash, PPO, and HMO options.  We even got a email from her late last night that she hasn't forgotten about us and is still working the numbers to get us all the info we need.  This is the first time my instincts feel at ease.

Now that I am tackling all the treatment options now I finally feel like I can focus on some more normal things.   I had my last childbirth class was on Tuesday and I'm trying to retain all the information.  Looking back I am so happy I decided on the Bradley classes.  Attending the classes over the past 13 weeks has definitely kept me grounded.  Every week it was a reminder of all the "normal" things about having a baby.  I just hope that I am able to put into practice all the techniques and exercises I learned.  During the classes I read Ina Mays guide to Childbirth and there was a chapter that really stuck with me. As a midwife she would occasionally face the problem of women failing to progress in labor.  Of course at a hospital you would be whisked away for a c-section but Ina May found that the failure to progress was often a psychological issue.  One woman was afraid she wouldn't be as good of a mom to her second as her first, another woman was regretting the vows her and her husband said at their wedding and wanted to re-do them with the words "till death do us part", and there was another single mom who was afraid of caring for a child on her own.  Now all these are pretty normal fears, I couldn't imagine the conflicting emotions a soon to be mom giving birth to a child she knows has a birth defect.  I am so grateful to modern technology for finding my little mans clubfoot so I am able to prepare and find proper treatment.  At the same time I need to be able to embrace the tough few years ahead and not let the fear of how his leg will develop hold me back in any way.

Friday, October 7, 2011

No news

This week I finally got what I have been news.

I had a 32 week ultrasound on 10/4 with a different OB (thank god).  She was so calm and professional explaining what she had found.  The LLD is still there but the ratio is still the same.  His right leg is 5cm long (50% for growth that matches the rest of his body) and his left tibia and fibula are 4cm (5% for growth.)  The percentiles are kinda scary. But the good news is that his leg did grow and the LLD did not get more significant over the past 4 weeks!  She is also very skeptical over the "6th toe" the previous OB pointed out.  It isn't a polydactyly toe.  She thinks it is either a shiny spot on the ultrasound or possibly some calcification on the side of the foot (maybe an extra bone).  Then OB finally noted that "I am not an orthopedist and cannot tell you what treatment would be like.  All I can do is mark his growth."  She did praised the orthopedist I am seeing on the 18th and said she took her daughter to him when she was having a spinal problem.  I'm still not convinced he can properly treat clubfoot with an LLD but at least I'm not completely wasting my time. So I'm marking this week with a little sigh of relief.  At least I don't have something new to stress about.

I've attached some pictures of the last ultrasound.  The foot/leg pictures are of his clubfoot side.  See what you think of the "6th toe"; its the shiny line on the outside of the foot.  Then of course I had to add a profile of my rad little dude.