Tuesday, September 26, 2017

J's Journey



Early August 2015, I got a positive pregnancy test result. I was over the moon and so was my husband. This little one would become our 2nd child. We had already been blessed with an adorable little girl in 2013. I was due on her next birthday. However, the pregnancy didn't really go as planned. At our first scan, the sonographer got annoyed because our little baby wasn't in the right position for her to take all the measurements she wanted, I was asked to come in for a blood test to check for Downs syndrome. The results came back with a 1 in 55 chance of a chromosomal abnormality and I was asked there and then if I wanted an amniocentesis the day after. After asking for advice, we decided to proceed and have it done. Despite my husband saying that the odds were really low anyway, we needed to know. The consultant in charge of the amnio showed us our baby from top to toe, s/he was perfect. 3 days later, the results came back and we were given the all clear. What a relief! The feeling was short lived however as 2 days later, I was asked to go back to the hospital for another blood test: "The lab isn’t so sure to have tested the right cells". Shock, worry, everything flooded back. I went straight to the hospital for the test and waited for the results a few days later. All clear once again!
We made it to the anomaly scan, elated to see our little one once again. Then the sonographer, a lovely girl this time, announced that one of her/his little foot was slightly turned inwards and that she'd need to refer us to a consultant to confirm the diagnostic. She added that it was totally treatable: "A bit of physio at birth is usually enough". I talked to a consultant straight after the diagnostic and was told once again that "There is nothing to worry about, physio will fix it." I then had a more in-depth anomaly scan with yet another consultant, who confirmed that the left foot was “slightly turned inwards” but that it was an “easy fix”. Reading my notes, later on, I got another shock: "Fixed talipes" was written there in big black letters. After some research, I freaked myself out with accounts of the Ponseti treatment, 5 years of boots and bar?!?! That did NOT sound like an easy fix to me!
After Jonas was born on 6th April 2016, we got an appointment for a hip scan and were told he was getting referred to the physio team. We waited and waited and waited. We'd been told treatment would start as soon as he was born so kept phoning the hospital to see where our appointment letter was. Jonas would have been about 3 weeks when we got a letter from the physio team stating; “We don’t take care of cases like your son’s, we’ve referred you to the Ponseti clinic” We were in disbelief, since it seemed to us that nobody had even looked at our son’s foot, before making that decision! The hip scan came back clear and we waited another week to be told on the phone that our letter was in the post and Jonas would be seen at 6 weeks.
We got in touch with Steps to ask for their DVD on the Ponseti method and to be added to the closed FB group, as well as the family support circle. After watching the DVD on the eve of Jonas’s appointment at the Ponseti clinic, we felt ever so slightly better about it all.
On our first appointment, things seem to go really fast. We met with an intern first, who graded Jonas’s left foot a 3 out of 6 on the Pirani scale, then were sent to the casting room and the main consultant changed the grading to a 6 out of 6, saying it was an atypical/complex case. First casting went well enough I guess, some crying on Jonas’s part, his little leg fighting the intern who was trying to wrap the cast around it and Daddy almost fainting behind us. After that Jonas just slept and seemed to forget about it. After 3 casts, we were told that he was ready for a tenotomy, which was booked 5 days later. Apparently, complex cases are ready for tenotomy earlier than “normal” cases.
The tenotomy was done under local anaesthetics. Numbing cream that is. I don’t know if it simply didn’t have any effect on Jonas or if it was meant to have a placebo effect on me and help calm him down, but he was screaming in pain the whole time. I had never seen him like this. I’d been told to let him go hungry so he’d focus on breastfeeding during the operation. He didn’t even give the breast a second of attention, he just screamed and screamed and screamed. I did my best to help him but there wasn’t anything I could do, those must have been the longest 5 minutes of my life, and his! Once his new cast was applied, he finally calmed down and we went back to the ward to get some quiet and for him to finally feed. We drove home and as he was unsettled and seemed in pain, I gave him paracetamol for about 48 hours or so.
When the last cast came off, we were given his boots and bar: grey Mitchell boots and the fixed Ponseti bar. I had been enquiring about the Dobbs dynamic bar and been firmly told that it didn’t work and was causing relapses. I had also enquired about the ADM single boot since only Jonas’s left foot is affected by talipes, but was told “The Ponseti bar has been around for 60 years! In the grand scale of things the ADM boots have been on the market for about an hour, do you really want to trust them?!” It made me feel a bit like a fool for even thinking of trying to make my son more comfortable.
After a few weeks of full-time wear, I noticed that Jonas was twisting his right (non-affected) ankle outwards. I contacted the hospital asking whether the angle of his right boot was maybe too much. I was told that 40° was the standard angle and that I shouldn’t be concerned, he was just “experimenting with his foot: Unfortunately, parents of children with talipes become obsessed with feet and see problems where there really isn’t any”. I bought it, despite it making me feel uneasy.
However by the end of the 12 weeks of full-time wear, as he started sitting up. I also noticed that his right (non-affected knee) was ALWAYS turning inwards at an angle that made me cringe when we tried to sit him up in his bath or simply on his play mat. I mentioned it at our next check-up and was told after a quick feel of his knee that there was nothing to worry about, his knee was in the right place. I had to accept it, but I hated it.
During the 12 weeks of boots and bar full-time wear, Jonas slept fairly well and just didn’t seem to be bothered with the boots being on, coming off and getting back on. However when the 14-hour wear started, even though he would let us put the boots back on easily at night, he would also wake up once or twice a night, screaming, tears rolling down his cheeks and fighting the bar as hard as he could. If you knew him, you’d also know that this is not his usual behaviour, he’s the happiest baby ever. He’s always smiling and we actually get his happiest giggles when he’s tired! All this fighting meant the top of his foot was showing signs of a pressure sore starting to form. I was using Duoderm every day to try and prevent it from getting worse.
That’s when I stumbled upon a video that someone posted on a Talipes FB support group. It showed a totally different unilateral brace being put on a baby. The spring-like shape of it was intriguing and I started to look for more information about it online. I looked up the Cunningham Prosthetic Care page.
I also asked around on different FB groups. I found a new group, run by a mum who’s used this brace for her son. And I ended up e-mailing Jerald Cunningham, asking him my numerous questions about the brace, the treatment length difference, the relapse rate, etc. He replied to me in no time. My husband was saying I was crazy to even think about going against our consultant’s advice. However when I e-mailed Jonas’s consultant to ask whether or not they’d heard of the brace, her reply was pretty dismissive: “Ultimately you are free to try any device you would want to, however, the supply would not come through the NHS at this time.” I asked a few friends what they’d do in my situation and the most common answer was: “Follow your gut, Mums know best”.
My view on it all is that medicine evolves at high speed, there are new findings every single day, I find it unbelievable that according to the best consultants in the UK, nobody has ever managed to improve on the Ponseti method, to make treatment more comfortable for the children and their family, whilst offering the same outcome. I also find it suspicious that the length of boots and bar wear keeps on increasing, the initial treatment lasted 2 years, then it went up to 3, 4, now 5, but I heard of someone saying her consultant was thinking of putting it up to 6 years!! If it’s such a great treatment in the first place, why does it keep getting longer and longer? Relapses are linked to growth spurts. Will we end up having to keep the children in a brace until they reach the age of 16 for girls and 20 for boys? I also find it strange that nobody will openly tell me what having “complex talipes” means for my son. I asked 3 people at the clinic and got the same dismissive answer: “The treatment is the same, you’ll just be seen more often”, well then how come both have to be differentiated? How come that when I look into it closer I find more cases of relapses and occurrences of tendon transfer surgery to treat them and why won’t anybody actually tell me about it?
I gave my husband the task to look into the different options we had for our son: Ponseti bar, Dobbs bar, ADM boot and DTKAFO by Jerald Cunningham. He came to the same conclusion as I did and agreed to meet Jerald Cunningham via Skype. An appointment was set on 21st November 2016 to assess Jonas’s foot correction, learn more about the brace and ask more questions. Jonas’s foot has been beautifully corrected, so that I didn’t have any worry about that. My main concern went to the relapse rate and the number of patients treated with the DTKAFO having had to be treated with tendon transfer surgery. Answers were that the relapse rate is pretty low at around 10%, however, none of the 300 feet treated with the DTKAFO over the past 12 years have had to go through tendon transfer surgery. Serial casting and, in a few cases, a repeat tenotomy were sufficient to treat any relapse. The treatment differs from the Ponseti method in that it lasts 2 years. Children are required to wear the brace 23 hours a day until they start cruising. It doesn’t infer with them moving, so that they can easily learn to crawl and walk in the brace. After that, nap and night-time wear lasts until the children outgrow the brace, at around 2 years of age. It is possible to get a bigger brace after those 2 years, however, Jerald says that he didn’t see any difference in bracing for longer. He suggests reverse last shoes or day AFO’s and physiotherapy as a treatment follow-up, in case of concerns. The DTKAFO attaches to the thigh and is purposefully about 1.5 inches shorter than the length of the child’s shin. Which means that with every movement of the leg, every kick, every bounce, every step, when wearing it, the calf is engaged.
Both my husband and I were really impressed at the way the brace follows child’s every move. So much so, that we ended up asking him how soon he’d be able to see us. He could make an appointment for us just a week later, on Monday 28th! As soon as we hung up. I went on looking for flights and accommodation in Maine, US. Found some relatively ok flights for the Saturday and off we went on our little adventure.
The flights went well, Jonas charmed everybody with his smiles and we finally touched down in Portland, Maine. After one day of rest, we went to our first appointment with Jerald. He welcomed us warmly and went on to check Jonas’s foot and measure his leg in order to manufacture the brace for him. We spent about an hour with him. I asked him how he’d come up with the idea for this brace, his answer made my heart swell with hope: “I tried the boots and bar once, only once, it was horrible for the child, horrible for the parents and horrible for me, I knew I had to come up with a better idea!” That confirmed the impression I already had of him, a man with a big heart, looking for the best results possible for his patients. I ended up saying how glad I am we were one night away from ditching the boots and bar and got the best news ever: “Ditch them today and get a rest tonight, it won’t change anything and by tomorrow he’ll have his new brace anyway!” I was over the moon!
We met Jerald the day after to attend an appointment at Maine Ortho in Portland. He designed the brace with the help of Dr. Oliviero, who is now close to retirement and suggested Dr. Kurt as a new contact point. Jerald showed him the brace and we discussed the reasons behind my trip to the US to get it. We left not long after with a prescription and headed back to Jerald’s office for him to fit Jonas’s brace, adjust it, and teach me how to use it.
Jerald is always looking for the most gentle way to treat his patients and instead of imposing the brace on Jonas for 23 hours straight from the start, he gave me a routine to follow over the first week, with Jonas starting by having the brace on for an hour, off for an hour, not wearing it at night for the first couple of nights, then gradually increasing to 2 hours on, 1 hour off, nap time wear, then 3 hours on, ½ hour off, etc. until we ended up using it 12 hours on, 30 min off. I must say that since Jonas wasn’t fazed by it, only curious to play with it, it felt like a bit of a fuss, however, it also allowed me to get a great deal of practice with it before meeting Jerald one last time the day after. He checked whether I’d put the brace properly and whether I was confident enough to fly back home with it, with the promise of regular Skype check-ups. And I was.
We flew home the day after and 5 months on, we’ve already had 4 Skype check-ups with Jerald and a few physical ones with our consultant or other orthos/orthotists. Within 4 weeks, I noticed increased flexibility in Jonas’s foot. I also noticed that his left calf got stronger, catching up in size with his right non-affected calf. I am not concerned about his right knee anymore and within a couple of weeks of having the brace, Jonas started experimenting with crawling. In May, we transitioned to part-time wear as he was becoming more and more confident with walking.
Within this time, I have tried to raise awareness of the brace as an alternative to the boots and bar. I met with the London Orthotics Consultancy in Kingston in February and they travelled to Maine in August to get trained into fitting and adjusting the brace. They are now the first offering it in Europe!
I have also met with the Ponseti team at Great Ormond Street Hospital in July and they were very excited by the possibilities of the brace for one of their patients.
During their examination of Jonas's foot, they noted that his tibial torsion seemed resolved, his anterior tibialis muscle pulls his foot in the right direction and his calf is well developed. They also pointed out that he had "a bit of a flat foot" but didn't see it as a concern as the same happens to children in boots and bar.
I mentioned it to Jerald at our Skype check-up and he suggested we alter the brace to support the formation of his arch. It's been 2 months now and his arch is definitely forming and getting stronger by the day.
I am excited by the prospect of a gentler yet as effective (if not more) treatment of clubfoot. I truly believe that treating clubfoot shouldn’t affect a child’s well-being and comfort nor disrupt their family life and I am glad for people like Jerald Cunningham who, rather than accept a 60-year-old method of treatment, try to improve on it for the benefit of our children.

4 comments:

  1. Clubfoot treatment is totally depending upon functional as well as biological responses of muscles. To prevent distressing problems with clubfeet, you should use devised a new foot and ankle abduction orthosis that holds the foot firmly and comfortably in place without causing sores. For more information please visit the site!

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    Replies
    1. Hi Thomas, sorry, I missed your comment. The brace I use for my son is perfect for him. As mentioned on this blog, the boots and bar simply didn't work for him for many reasons.
      Also, I would happily see you wear the product you are currently recommending for my son and tell me after even just 7 days of 23 hour wear that your feet feel comfortably supported and you have been able to avoid any kind of marks, rubbing, blisters and sores.
      Kind regards.

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    2. I find this remark a bit funny when Pressure Sores and Blisters are a daily discussion on countless Clubfoot forums.
      I’d take a little skin irritation with this incredible brace over oozing sores I often see from your inprisoning device any day.
      I would think a prestigious company like yours would want to be on the forefront of medical innovation by manufacturing this brace. Instead, I see you have actually gone backwards by no longer offering the ADM to children who do not tolerate a device that is over a half a century old.

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  2. This comment has been removed by the author.

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