ਸਾਡੇ ਸੰਸਥਾਪਕ ਦੀ ਕਹਾਣੀ
The Story Behind the Society
I remember the day like a vivid dream. We were excited to go for our 20-week ultrasound appointment, when they do the anatomy scan and for the first time you can really see your baby! Because I have been a Registered Nurse for a long time, I have had a lot of exposure to looking at medical imaging and can understand a little bit of what I am seeing. My husband was so excited, and I explained to him what he was looking at as tech scrolled around on my belly. Magnus looked so perfect, we could see some features on his face and watched his arms move around and even stuck his thumb in his mouth. Then I saw his foot and kept looking at it as I thought it looked turned in a different position. The tech spent a lot of time looking at his legs and measuring and trying to get different angle photos of his feet, never saying anything to us. As I am no radiology professional, I let it be when I left the appointment, not really thinking too much of it.
It was 2 days later; we received a call from the doctor’s office requesting that we come in and discuss the ultrasound. I felt something was wrong and tried to prepare myself for what I might hear. We arrived at the doctor’s office, and it felt like forever before we were called in. The doctor seemed nervous and told us that they saw that Magnus had a deformity called Talipes Equinovarus. She went on to say that we would have to be flown out of the Yukon to BC Children’s Hospital to be examined by a neonatologist and speak with a geneticist, as well as, have a more detailed work up including ultrasound and amniocentesis. She was reading from the computer and continued to tell me that this deformity can be in addition to other conditions such as spina bifida, arthrogryposis, constriction band syndrome, tibial hemimelia and diastrophic dwarfism to name a few.
My mind went wild! I knew I was older (40 years old) and having this baby and risks were associated with it. I really couldn’t understand what she was telling me … It all sounded so serious! I started to panic, got home, and started googling everything! It was then that I learned that talipes was Clubfoot, she had never explained it to me or gave us any information. My husband was the strength and calm in this information storm.
A couple weeks after the ultrasound, we flew to BC Children’s as a family, to go and talk to the specialists. It was a busy time with our other son, Odin, sleeping a lot and being so patient at the hospital during appointments.
At BC children’s, the specialized ultrasound went well, and the tech gave us so many photos! The we went to talk to the geneticist and neonatologist. I was offered an amniocentesis. which we refused as there was risk of causing a miscarriage but would give definitive answers on if the clubfoot was related to any other genetic cause. At this point, they discussed the options to continue to pregnancy or not, there was no thought other than, we were having Magnus as planned. I was worried and didn’t understand all the information. We still weren’t given any information on clubfoot other than a pamphlet from BC Children’s explaining their treatment with Botox. The Gold Standard of Ponseti Method was still never mentioned to me by anyone while we had appointments.
May 12, 2020, amid the beginning of the Covid-19 pandemic, Magnus was born. Everything went well with the delivery, luckily my husband was allowed in the room with me, and Magnus came out and he was perfect. It was the first time I got to see the little curved feet that I had been so worried about and in that moment, I felt like so much fear faded away. I regret that there was less than 24 hours that I got to spend with him and love him as is with curvy feet.
One day after Magnus was born, he received his first casts of so many to come. The surgeon had given a printout about Clubfoot, and it explained the Ponseti Method very clearly, he then asked if we were interested in receiving Botox instead of a tenotomy, to which I replied, no, we would be going the route of best practice. By this time, I had joined multiple Facebook groups and had read journal articles and was quite well versed in what to expect and what to watch for in terms of complications.
My first question was, how severe are Magnus’s feet and I was told average (not accurate). Then I asked how we would be rating the progress, so that I could follow along, to which I was told, he (the surgeon) would assess weekly by looking and no scores were recorded and no initial measurements.
The first to casts seemed to go smoothly, other than Magnus crying throughout casting. Then the 3rd cast slipped, and it was removed and replaced the next day. After that, I started to notice a rounding on the sole of Magnus’s foot and would ask at every appointment but was told it was fine and it would go away after the tenotomy (cutting of achilles tendon). One and a half weeks after the tenotomies were done, Magnus had the cast removed in the clinic and was assessed. I was told that his heel didn’t look like it was dropping and that they could do surgery to fix it / pin it down. I was very concerned at this point.
When his post-tenotomy cast was removed after the 3 weeks total, I mentioned for the last time that I was concerned. I was told again that all is good, by a Dr who wasn’t in the room assessing, rather over FaceTime. We were discharged home with boots and bar to wear for 23 hours a day for the next three months. We barely made it 2 nights. Magnus cried and sobbed in such pain; I had never heard it before. I was unable to console him. His foot had kept slipping out of the boot and I kept putting the boot back on. I wanted to comply with treatment. I wanted to be a parent who succeeded. I wanted to prevent relapse and I didn’t want to fail. Finally, I took the brace off and started to look at his foot. I wondered if I was crazy… his foot looked bent the wrong way!
I had read about Dr. Pirani, and had talked to him once about another concern, and I reached out again sending pictures. With such a quick response, he confirmed that indeed something was very wrong, I was devastated. I blamed myself for not protecting my son and advocating harder, when I knew something was going wrong. I should have known better. I was so upset and hard on myself. The effects of the pandemic, Magnus’s treatment and my self punishment flowed into a period of terrible postnatal anxiety and depression. Feeling like you fail your children is the worst thing I have ever felt.
I was told by Dr Pirani, that he would be so happy to treat Magnus. We would start by leaving Magnus out of boots and bar and no casting for 4-6 weeks. This would allow him to relapse to the original clubfoot, because “A clubfoot always wants to be a clubfoot”. He was right (no surprise)! Thankfully, Magnus’s feet did just that, returned to how they were initially, and we could start all over again.
THE SECOND TIME – HEALING (for Magnus and me)
Aug 25, 2020, The first day of the rest of our lives. Magnus and I had the joy of flying on empty airplanes weekly for 2 months to Vancouver from Whitehorse, Yukon, to get casting and treatment by the one and only, Dr. Shafique Pirani.
Magnus did so well, and Dr. Pirani spent so much time explaining and teach me everything I needed to know. I asked so many questions. He does this with everyone. I have stayed all day to talk to parents and find out their stories. We were never in a rush. In taking his time, Magnus rarely cried and if he did, we stopped. I used a white noise machine and breast fed during the casting. The whole team was so great, and they worked so well together, everyone was in sync.
Dr. Pirani not only took time to heal Magnus, he started and continues to support my healing. This journey is about every child with clubfoot and every caregiver. I do not think that many understand, how affected parents are by care that doesn’t go as planned. The journey is so difficult and filled with pressure even if there are no complications. It is a lot of responsibility monitoring your child for issues when you are not an expert in clubfoot.
At the second appointment, I saw Dr. Pirani using an app to keep track of Magnus’s measurements and Pirani score. I told him that it was wonderful and that I had just been talking about how important it would be to have an app for the families of kids with clubfoot. They could record their progress, keep notes, instructions and have the information at the tip of their fingers maybe even one day be able to share it with the physicians as a team. Dr Pirani thought it was a great idea and wanted to know more! I wanted to first see a case successfully treated … Ours. And I have the photo proof to show what success is to us.
Magnus moved onto his boots and bar phase Sept 29, 2020 and has been doing amazing very since! I feel relaxed when Dr. Pirani is taking care of him. I reach out to talk to him when I have concerns and am always responded to in a timely manner and given so much encouragement.
I knew that I would need other amazing families involved and it would take time and money. So, my first thought was to create a non-profit organization and gain registered charity status to help us fulfill our mission. This was done when Magnus turned 1 year old, May12, 2021.
It is an incredible moment knowing that this website is officially LIVE the day before Magnus turns 2 years old, May 11, 2022. This is for him! Still as perfect as day 1!
We have managed to fundraise to accomplish our goals, bring awareness to the public, build up partnerships with other non-profits and start to advocate publicly for our needs.
We have only just gotten started.
We are a society that is for parents, by parents!