When I was 20 weeks pregnant, during that first "big" ultrasound, I asked the sonographer if everything looked good, and he said, "I'm not allowed to say." I thought, well that's weird... if everything was ok, he would have just said, "Yes, I think so, but the doctor has to look it over." Why worry the preggo, right? It turns out that everything wasn't ok. My lil' boy's feet were severely twisted. Usually this happens with spina bifida cases, but thank the Lord it turned out his was an isolated case (nothing else wrong). It still sucked.
When Josiah was born, his feet looked like this:
(Geesh... he was not screamin' pink baby you want to see! He wasn't breathing well, and they took him to the NICU right after this...)
These two pictures were taken at 6 days old, right before we went to meet Dr. Hohl, the pediatric orthopedist. At the first appointment, Dr. Hohl told us that we would have to start casting Josiah's feet & legs to stretch/mold his feet into the correct position. We would change casts every 10 days.
Oh boy did I cry... I had PPD, and I'm sure now that the whole feet-thing was one of the biggest causes.
Here he is after his first casting... broke my heart.
So we went through 5 months of casting. (Imagine having a baby with casts from toes to thighs... it was not fun... but we got through it.
Josiah was a champ. He never seemed to be in pain or uncomfortable... even when it was June & 100 degrees! (*this, by the way, I attribute to much prayer! God was with Josiah in all of this!) After 5 months of casting, we got his feet to this:
They were relatively straight (pointing forward) but not able to flex up right. The casting became ineffective because Josiah started kicking and wiggling his casts out of place. Dr. Hohl (and a second opinion doctor) came to the conclusion that surgery was necessary. In September, when he was 6 months old, Josiah had surgery. It was the most heart breaking day of my life (I always feel like an ingrate/whiner/baby when I say this because I know parents who's kids have cancer, leukemia, major handicaps, etc.... I know there are so many worse things in the world... that said, in my lil' world, it was the worst day of my life up to that point. Handing a baby over to someone so that they can cut him open is horrible).
He had a Posteromedial Release on both feet.
Surgery went great. Josiah did amazingly well. The first day was the worst, then he seemed to go right back to his happy self. Again-- God was with us. 6 weeks after surgery, they put him back under, took the pins out, changed the casts, and did another operation to correct a unrelated problem (Hypospadia- that was so sad for him too! Poor guy). The only good thing after surgery was he got these blue, all fiberglass casts (no plaster) so they were super lightweight.
After another 6 weeks, on December 9th, when he was 9 months old, the casts were removed for good. His feet were perfect. We praised the Lord:
He was finally able to take baths, wear footsie pjs, go in the pool, wear shoes, and just bend his legs! He learned to crawl at 11 months, and was fitted with ankle-foot orthotics like the ones below to hold the correction achieved during surgery. They hindered his learning to walk, however, so we stopped putting them on until he learned to walk at 18 months. I praised the Lord for his faithfulness.
He also had a Dennis Brown bar at night to turn his feet out. (look at the wood on the crib... stupid bar chipped the heck out of his beautiful crib)...
When he turned 2, he got new AFOs for walking, and they fit inside these orthotic shoes. He'd been wearing versions of these AFOs from age 2 to 5.
At 4 years post-op. Josiah's feet were still remarkably better than where we started; however, like I've discussed in previous blogs, his feet still turn in, especially the left.
(You can see the different between a "normal" foot (baby Ava's) and Josiah's... the one on the right in the picture is his left foot. It curves. This is called metatarsus adductus. (The metatarsal bones are the ones connected to your toes (what you'd see looking down at the top of your foot). Adductus means turned toward the mid-line of the bodyIn the summer of '10 Dr. Hohl diagnosed him with tibial torsion. He wanted him to either wear these cables everyday all day which "might" correct it or have surgery.
After seeking out 3 more opinions, it was adamantly decided that he did NOT have tibial torsion and the surgery Hohl wanted to do was absolutely unnecessary.
The consensus was to leave him alone.
The bones are very small and still growing. All the surgical options at that time involved cutting tendons and bones.
Out of the 3 doctors we saw, Dr. Berenstain from Cedar Sinai was the one we liked the best, but soon after that appointment, we found out he moved to NY.
I decided in January of 2011 that I should establish care with a new ortho so that when the time was right, we would already be connected to someone we trusted.
I went back to Loma Linda because there was a new orthopedic surgeon there, and I was hoping he was at least nicer than the one we saw there before.
His name is Dr. Scott Nelson, and as soon as he walked in, I knew this was the one.
He actually looked at Josiah first, smiled, and shook his hand.
Most doctors walk in, and often talk to their nurse or residents as if you're not there.
Dr. Nelson is very personable. He explains everything clearly, he does not talk down to you or make you feel that you're wasting his time.
We discussed Josiah's previous treatment and misdiagnosis. He said it was a very common mistake to do tibia torsion surgery to "correct" residual clubfeet.
He discussed with me the "Fowler method" of correction that the previous doctors had discussed doing. This is essentially cutting a wedge out of one side of the bone, pushing the foot over, and sticking that piece of bone into the other side, creating a support (wedge).
He explained the problem with this surgery is that kid bones are so small and soft that as the feet grown, the wedge does not do a great job keeping the foot straight. Often follow up surgeries are needed, but hard to do due to the invasive-ness of that surgery.
He explained to us a relatively new way to treat clubfeet using the TAYLOR SPATIAL FRAME (TSF aka "the fixator.")
The frame is fixed to the bones of the foot & tibia. Using computer imaging, this frame mimics the deformity, then, it generates a "prescription of adjustments" that will bring itself back to the neutral (correct) position, taking the foot along with it.
Each night, the frame is adjusted (like turning the key on your mouth spacer for braces) by turning 6 knobs. These are done in millimeter increments... very quick & supposedly painless turns.
Just like the Ponsetti method of casting, this frame puts the foot in specific positions in a specific sequence. First the foot is brought over laterally, then brought up vertically, gradually stretching tendons, and causing bones to grow in the straighter position.
This was the least invasive surgical option we have heard of. There is no cutting of the tendons or bones, or even large incisions. It has had successful results, though because it is relatively new, the longest case study for Dr. Nelson is 4 years.
The truth of the matter is no clubfoot correction is forever.
Clubfeet is written in the DNA. We will always be fighting against it.
With that in mind, we felt that this would be the best option because it leaves the door open for future surgery if needed without creating scar tissue, stiff bones, etc.
Dr. Nelson recommend that we do this operation as soon as possible because the bones are tendons are most flexible the younger the child. Also, post-op will be harder on us the bigger Josiah got.
Surgery date was set for June 21st.
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