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Max’s Story

From CLUBFOOT To CHAMPION

Hi, I’m Louise & I’m Maxs’ Mum. I will never forget (although over 22 years ago!) that moment in the consultants’ office, discussing the findings of the 20 week scan, when he delivered the news saying my baby has severe bilateral Talipes. I must’ve been visibly shocked as he said ” Oh don’t worry we’re not talking about termination!”  My world collapsed under a barrage of unanswered questions, worry & immediate anxiety as I was told to make the next ante-natal appointment & he walked out the door. A future of years of consultations & operations ahead, that scared me.

He was born with severe bilateral talipes, both feet hanging down, almost facing backwards; (also with scoliosis & a deformed rib-cage) I was shown how to manipulate his feet at wk 1, followed by series of casts from wk 5 up until his tenotomy at 13-14 wks old. Meanwhile I was busy massaging him & his feet in between casts. (As we were told to soak his casts off day before his next appointments) He was the youngest at the time to ever have the tenotomy operation in the UK.

He had 4 more casts up to 6mths, whereby he developed a little rash, at that point the eminent Mr Henry our consultant orthopedic surgeon at Derby, suggested some breathing space temporarily & left the cast off. I came to really respect him, & like him; he was always there with the medical side if needed yet he trusted me as a parent & together we worked as a team, I remember almost begging him for a little bit more time to keep working my therapies on him; he looked at the degrees of improvement I was getting and  he took a leap of faith & trusted me; I shall always be grateful for that. All the while he asked me to keep manipulating as he knew I was keen to be a part & try & do something to help, no matter how small that may be. I respected the system, was wholly dependent upon it for my son, yet had deep feelings of helplessness & fear of the journey ahead of us.

I had also started my Aromatherapy course & had made up some specific oils to aid the mobility & flexibility of his feet & help to soothe him naturally as well. Mr Henry laughed a little at my “  home -remedies” but humoured me.  Over next couple of months he noted improvements of flexibility & was pleased with Maxs’ progress. Every session he asked me to continue with my massaging. I had been explaining what I had been doing for few months now &  at 11mths he actually put it in his notes…

“Mum is manipulating his feet very nicely & rubbing them with specific oils which certainly seems to be helping”

Other operations that were discussed no. 1) his left foot was worse than his right, so operating on it with a further ETA, & then at 18 mths the consultant suggested, no.2) Release of the big toe abductors & no.3) Metatarsal osteotomy when older. Fortunately, he didn’t need these in the end.

At just over 1 year, Max had severe reaction to MMR jab & onset of Autism occurred, (At 4 ½ years it was confirmed) which became very challenging indeed as it was suggested he needed 24/7 care in specialised centre; my little boy who knew the alphabet, was walking etc, was kidnapped & all but a shell was left, no eye contact, kicking, screaming, he  freaked out with water refused to eat, lost speech etc, we were devastated.

I declined the offer & gave up work to help him. My Mum was also diagnosed with cancer at this time & I spent a lot of time helping her & then the Macmillan crew as she chose to stay at home.

From the age of 6 months; his treatment stopped! Max never went back into casts, or boots with bar, or had any of the other operations…  I kept massaging & the consultant regularly reviewed & would closely inspect his feet each & every time… up to age of 7 & then discharged. (I have exact copy of all medical notes.) He even asked me to speak to head sister in the unit with other parents & explain & show them. I now work teaching parents Infant massage & also massaging people with Clubfeet.

The value of working on the feet & the body, has such an enormous positive impact. It is well documented. It helps to stimulates the muscle fibres, ligaments, tendons, fascia & increases oxygen flow to the whole area. Massage is well known for helping babies with colic, teething, sleeping, reducing anxiety, improving mood, reducing pain & stress hormones as well as deep bonding, positively affecting those giving it too, thus empowering parents & carers. It really helped me to be part of his solution.

Fast forward to present day & Max is doing amazingly well! We’ve had to fight the education depts few times for his rights, moving schools & colleges to help support him. For the last 5 years he has been using sport to help him, & now studying “Sports” so he can become an ambassador for ‘All Inclusive sport’. Occasionally, mistaken for a tutor, he is high functioning & unrecognisable as the wee boy from before. He has also been entering ‘Able-bodied’ Powerlifting competitions for 5 years, which has seen him become part of “Team GB”, with the World Powerlifting Union. Recently, in October, at the “World Powerlifting Competition 2018” he won Raw Bench Press title within his category, as you can see in the photo he’s all smiles! So far, we’ve had an amazing journey & I am extremely proud of him.

His current treatment involves massages & hydrotherapy sessions which helps all his conditions & with his powerlifting sport involvement it helps provide essential maintenance & I still massage his legs & feet from time to time.

The journey can seem rather daunting at the beginning, & when we close our doors to our homes we can feel rather isolated … but please; take heart as we are ALL raising little champions in their own right! I had no idea my participation would be so profound, as parents our involvement is powerful. The “STEPS” platform is an incredibly supportive place for parents & carers to share the Clubfoot journey, I wish it had been available when my son was born. Huge thank you to STEPS for letting me share mine & Maxs’ Story.