AT LONG LAST!
This past month has been a rollercoaster! My mind has been doing laps:
- YAY we're done bracing!
- C'mon! You can't stop now! He's not even 2!
- But It's probably best for Jonas to stop if he doesn't need it!
- What on Earth are you thinking?! Brace for longer or he'll relapse?!
- But what if he doesn't?
- And what if he DOES!
- But his foot is PERFECT!
- Says every CF mum ever 6 months before their child relapses!
- Arrrrgh!
- Told you so!
- But...
- DON'T go there!
And obviously, Jonas was totally oblivious and far more interested in bouncing about like a bunny! (As you do...)
On 17th March, we had a Skype appointment with Jerald, another full check-up to check on dorsiflexion, external rotation, general flexibility and gait. As always, everything looked perfect, so we "only" needed to discuss getting the next brace or not.
The difficulty for us was that Jonas had been in boots and bar for almost 5 months before getting the DTKAFO. There's no way to know whether or not those 5 months matter or not for Jonas's future.
Typically, the DTKAFO/Cunningham brace is worn straight after casting until the child outgrows the 2nd brace around the age of 2. In our case, stopping now would mean that Jonas only wore it for 15 months.
There is absolutely no data on children starting the brace later as... hum... Jonas is one of the first few to have done it. And the little data gathered over the past 13-14 years by Jerald Cunningham really isn't enough to try and predict what will or will not happen to Jonas. Either way, as we know, clubfoot is an unpredictable condition so decisions have to be taken in the present, for the child's best interest.
Claire, the physio, and the local orthotist we met through her, didn't really want to share their opinion with me. They agreed that the Ponseti bracing schedule wasn't based on any research proving that 4-5 years of bracing was better than 2, but they didn't feel qualified to advise me as to what was best for Jonas, using the DTKAFO. Alex, the osteopath, felt that bracing longer in our situation and with our brace couldn't be detrimental for Jonas. Other CF mums I talked to privately were confident that whatever the decision I took, I would always find a way for him 💖
Talking to Jerald, I felt a lot lighter knowing that we were in good hands. Our current brace was definitely getting to the end of its life. Jonas was starting to get a slight red mark on the outside of his foot from the foot piece becoming too narrow and the plastic spiral hadn't held the reset very well over the last month and was back to being very stretched, after its patch up in February. Jonas had got so strong that it only held his foot at about 20° external rotation.
The low quantity of data on the Cunningham brace didn't bother me when we first got it, because, to me, boots and bar meant night time wake-ups with a distressed baby and spiraling into depression at the thought of tethering his feet every night for 5 years, whereas jumping into the unknown and trying this innovative brace was a way of getting my happy baby back and letting this bracing business take second place in our night-time routine. The threat of the ATTT surgery is always on my mind. However, the self-reported relapse rate with the C-brace is around 10% and according to Jerald Cunningham, casting is usually enough to stop it and reset the correction. Comparatively, to me, the Ponseti method felt a lot riskier.
This time, I don't have any date to lean on to. My husband and I just want the best for Jonas and there's no way to know whether bracing for longer or not will be beneficial to him. Jerald agrees with Alex that indeed, it can't be detrimental, and that's kind of as good an opinion as we can get, really!
So that's it, then, let's get the next size up!
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