Wednesday, November 17, 2010

Club feet

Dear Parent (dear me last spring),

You've just returned from your 20 week ultrasound and you are frightened.  The technician doing the sonogram stopped talking halfway through, and looked concerned, and called in a doctor, who spent a longer than expected time staring quietly at the black and white screen.  Then the doctor told you they found an abnormality: your baby has club feet.  And you said "Feet shmeet!" out loud, because you had been worried that perhaps your baby was missing a brain or lung or heart.  And the doctor told you that this was not "Feet shmeet", that this was very serious and could indicate other birth defects.  Through teary eyes you scheduled 2 follow-up ultrasounds to monitor growth and a fetal echocardiogram to check your baby's heart.

Now you're at home and you're searching the internet for pictures of club feet and you're becoming more frightened because those ranked highest on the Google searches are terrifying (and not typical).  STOP.  Take a breath.  And another.  There.

At this point, I wanted numbers, percentages, probabilities.  You will likely be offered many tests and genetic counseling.  For us, it came down to this: Luke and I had made the decision long ago (as teenagers who didn't know each other yet) that we wouldn't have an abortion.  We were interested in doing tests that might give information that could help our baby, like the fetal echocardiogram because a heart defect detected early could be operated on directly after birth.  But we weren't interested in tests that added risk to our baby's health, like amniocentesis (there is a 1/400 to 1/200 risk of miscarriage after an amnio because the sack is punctured).  We also denied tests that had no added risk to our baby but had high rates of false positives (late in pregnancy maternal blood tests, for instance) because a false positive could put an unnecessary cloud of gloom over the pregnancy.

An overwhelming majority of the time, dear parent, your baby will only have club feet.  You probably will not completely relax until you hold the little one in your arms 20 weeks from now, but try.  Try so hard.  Enjoy pregnancy, and laugh, and think it's funny that a little ankle sticks out against your belly skin rather than a little foot, and be SO VERY THANKFUL that if this is only club feet, as is likely, it is going to be fixed quickly and nearly painlessly in just months after your child's birth.

And now do this:

1.  Join the "clubfoot" Yahoo group.

2.  Read up on the Ponseti treatment method.

3.  Find an orthopedic doctor who specializes in clubfoot treatment and generally follows Ponseti method.   This means that, for typical club feet, they will cast the feet to the outer range of their motion.  They will set the first casts in the first week of life and recast every week or so.  In 4-10 casts, the bones will be straightened because babies are magically malleable.

Schedule a prenatal appointment.

Note that 90% of the time, club feet need a procedure called percutaneous tendo-achilles lengthening.  This means the doctor cuts the Achilles tendon through the skin, sets the legs, and the tendon heals on its own in 2-3 weeks because babies are magically fixable.  (The tendon wouldn't heal itself in an older child or adult.)  Without this procedure, your baby would likely walk on its toes.

This procedure can be done under local or general anesthetic.  Benefits of local: no added risk from general anesthesia.  Less expense.  Benefits of general: easier for doctor to set the feet correctly, increasing the chance that the tendons heal correctly and reducing the chance that the procedure has to be done again.  I talked to doctors who did the procedure each way, and I think either way is a good choice.  I'm told that in the Bay Area it's about 50/50 each way.  If you have a strong preference to avoid general anesthesia, find a doctor who does this procedure under local because your child will likely need it and it is quite difficult to switch care partway through treatment.  If your doctor uses general, make sure that the anesthesiologist works very frequently with infants (for instance, go to a children's hospital).  If your baby is at all sick on the day of the general anesthesia procedure, call and cancel it.  Respiratory infections and flu-like symptoms greatly increase the risk of complications.  Also, make sure that your baby is at least 6 weeks old adjusted age (44 weeks post conception, not LMP) at the time of anesthesia.

3.  Consider equipment.  I found that the baby bjorn carriers (especially the ones with lower back support, like the active and synergy) work best for cast and braced babies.  I used wraps and ring slings with Scott, but Mark couldn't curl his legs up and it's hard to get the braces thread through those kind of carriers.

For clothing, pants and onsies that snap all the way around are great since they can be removed without removing the feet braces.

For socks, the stretchy newborn socks work best in the casting phase because they fit over the cast toes and protect the edge of the cast from deterioration.  For braces, triple roll cotton socks are best (Target's Circo or Old Navy brands) as the socks have to be very long to work with the braces. 

Buy a good eraser.  It's useful for removing stains from those pretty, light grey suede shoes.  (Light suede baby shoes lead to lots of time spent removing stains!)

4.  Again, relax.  This really isn't a big deal and treatment is reliable today, here.  Your baby can still go on to win a Superbowl (Troy Aikman had a club foot) or be an Olympic gold medalist (as did Kristi Yamiguchi and Mia Hamm).  Mark is 9 weeks old and his feet are beautifully straightened already.  Feet shmeet. 

Love,
Now relaxed parent of now straight-footed baby boy

6 comments:

Karen said...

Jenn,

You are amazing. Please find a way to post this somewhere else. Please submit it to parenting or baby magazines/ blogs. Your wisdom and experience can help tremendously, I know it.

I admire you for being so poised through everything and anything you encounter... particularly since Luke has been by your side. You guys are a great team and we love you.

P.s. Mom was right - you always were a talented writer!

LoriLyn said...

Please note that I agree with Karen in every way :)

Jennifer said...

Oh dear girls. Thank you. Luke has helped me gain composure and poise ... he's my ballast.

Bridget said...

I love, love, love this. I agree, this is publishable quality. Thank you so much for sharing this, Jenn. (Luke, I love you too, obvi.)

Judy said...

I agree with Karen and LoriLyn. Thank you for sharing your real life experiences. Wouldn't that have been something you would have liked to have seen when you were going through those hard times? Please do publish it.

Dats

PS; Must have gotten them there riten skkiilse fume me. thimk so???

Karen said...

Oh, our father... he's a funny one! :)