September 23, 2023
We are sharing our son Torin's medical diagnosis and treatment plan, in the hopes of garnering awareness for our small business and our family as we navigate this complex medical journey. Torin's path ahead is challenging, but his family, friends and community are working hard to rally around him and ensure that we are able to support, care for, and reassure him every step of the way.
Thank you to everyone who has reached out over this past year to offer words of concern and deep caring for our special boy, Torin. Thank you for the phone calls, home visits, meals, offers of childcare help, texts, reassuring hugs and smiles, DMs, and heartfelt chats at the shop counter. Thank you for choosing to make a purchase at our family business when you are able, for referring a friend or family member that's expecting, and for sharing a positive experience on social media or leaving a Google Review to help others discover Momease Baby Boutique - your continued kindness and ongoing support is truly heartwarming.
Our son Torin is 8 1/2 years old and has always been a healthy and happy boy. Torin has 3 siblings (Lochlan age 15, Kingston age 11, and Bronwen age 5), and adores his family and friends. He loves attending school, enjoys basketball and swimming, eating Cheerios and vanilla ice cream, playing Zelda or Mario Cart with his big brothers, snuggling with his dog Bindi or his cat Wyatt, and sleepovers with his grandparents.
Torin has Down syndrome with Global Developmental Delay, and he has always been closely followed by his pediatrician and medical team. He has limited ability to communicate verbally (with people who aren't familiar with him), and often uses an AAC (augmentative and alternative communication device) to communicate with those around him at school. After several abnormal liver function tests in 2019 and 2020, and an ultrasound of his liver in 2021, Torin was referred to a Pediatric Gastroenterologist at BC Children's Hospital for a consultation.
During the Fall of 2022, Torin experienced multiple illnesses and hospitalizations. He had always weathered the standard childhood sicknesses in a typical way (just like his siblings), and he had never been admitted to hospital before this. Torin contracted viral infections in October, November and December of 2022 that sent him into a metabolic crisis very quickly. Within an hour of the onset of a fever or vomiting, Torin would be pale, listless, weak and almost unresponsive. We rushed him to the Emergency Room at Victoria General Hospital each time, where he was quickly assessed, admitted to hospital, and placed on supportive IV fluids and medications. Torin's viral infection in December was further complicated when he developed bacterial pneumonia while in hospital and had to be placed on supplemental oxygen and antibiotics. Although we were aware of his abnormal liver testing at this time, we had yet to receive any official diagnosis, and the doctors told us that his repeatedly illnesses and corresponding crashes were unlikely to be related to Torin's liver.
During these months of recurring illness, Torin also experienced significant weight loss, and began complaining of regular 'tummy pain' and headaches, often refusing to eat. In January of 2023, Torin's Pediatric Gastroenterologist at BC Children's Hospital ordered an MRI under anesthetic and confirmed the diagnosis of an Abernethy Malformation, or Congenital Portosystemic Shunt. This is a very rare and serious liver condition that involves an extra vessel that bypasses the liver: shunting blood AROUND the liver, instead of funnelling it THROUGH the liver for processing. The result of this condition can mean limited growth and muscular atrophy (as the body pulls essential proteins from the muscles that it's not receiving through digestion); cognitive impairment with learning disabilities and mood changes (as poisonous ammonia is diverted to the brain for processing, instead of to the liver, in a metabolic condition called Hyperammonemia); digestive issues and pain (related to an inability to metabolize proteins and the nitrogen/ammonia byproducts of protein digestion); as well as a significant risk of liver cancer over time.
After the diagnostic MRI at BC Children's Hospital, we were notified that Torin required surgery as soon as possible to fix his Portosystemic Shunt, but we were also told that there is no surgeon in Canada who is able to perform this surgery. We were stunned.
We had expected that a surgery might be recommended, but it never occurred to us that Torin would not be able to receive such an important medical treatment within Canada. We were informed that the only surgeon who was performing these types of specialized surgeries on the continent was Dr. Riccardo Superina, working out of Lurie Children's Hospital in Chicago, Illinois. Alongside this news, Torin's specialist also mentioned the need for us to start writing our local MLA and the Ministry of Health personally, in order to help advocate for Torin's international medical care approval in a timely manner. This was a lot to process, and thus began the long saga of governmental approval for Torin's care.
The process of government approval for out of country medical treatment funding is essentially this: an application for Out of Country Medical Treatment is submitted to the BC Ministry of Health by the referring physician. The timeline of approval is subject to 'triage' of your individual application and the corresponding urgency of the care required. We were told to expect a wait of approximately 6-12 weeks for Torin's approval, but that the wait could be longer.
Unfortunately there is no point of contact at the Ministry of Health for anyone other than the attending specialist. This means that patients or guardians are not able to speak directly to anyone at The Ministry of Health about the status of a funding application, and all inquiries need to be made via the referring physician. Once the Ministry of Health Funding department approves your application, you are notified via letter mail, but would generally receive the news through your doctor's office beforehand (since they hear first). There is a time limit on this approval - generally 6 months from the date on the approval letter. This represents the amount of time you have to receive out of country medical care and to submit the corresponding invoices to the BC MSP (Medical Services Plan), which is the payment processor for the Ministry of Health. Following ministry funding approval, MSP will cover the cost of in-patient out of country medical care, however they do not provide any financial assistance for travel or accommodations during international medical treatments.
Torin's application for Out of Country Medical Treatment was approved by the BC Ministry of Health on September 1st, 2023. Torin will be cared for by Dr. Riccardo Superina at Lurie Children's Hospital, and we expect to travel to Chicago on November 5th, 2023. We are so incredibly grateful for the exemplary care Torin has already experienced at BC Children’s Hospital (and for how they have addressed some bumps along the way), and we feel blessed that Torin is now approved to receive world-class medical care in Chicago, with his treatments and surgeries being fully covered by BC MSP.
Torin is set to begin treatment on November 7th, 2023 and will undergo several procedures and one or more complex surgeries to fix his Congenital Portosystemic Shunt. We expect our time in Chicago to be between 5 and 6 weeks, and we hope to bring Torin home just before the holidays. This length of stay means that my husband Adam and I will have to leave our 3 other children behind in Victoria with family, and I will have to take a significant step away from the day-to-day operations at Momease. Due to the severity of his condition, and the risks involved with his surgeries, we feel it's important that both of us parents accompany Torin throughout the duration of treatment.
Thank you for taking the time to learn more about Torin and the medical journey that lies ahead for us. We are currently in the early stages of planning our travel to Chicago: completing applications for Ronald McDonald House and making back-up hotel reservations in case we don't get in; looking at flights and planning the safest and most expedient way to get Torin there and back during the height of cold and flu season; creating grocery lists for the family back home, and a must-have tally of lunch faves; attending multiple doctor's visits and completing pre-surgical testing for Torin; nurturing and mobilizing our amazing team at Momease to help support the shop while we're away. Thanks to his Victoria-based health team, we also have an Emergency Medical Plan in place for Torin prior to his surgery, should he experience any similar health challenges and illnesses to what he did last Fall and Winter.
I plan to continue developing this Blog as things unfold - using it as a tool to help keep in touch and provide updates to all our wonderful supporters back here at home. Thank you again for your care and concern for Torin, for our family, and for Momease Baby Boutique. Thank you for following along on this journey - it truly means the world to us.
With love from the McLean Family,
❤️ Lyra, Adam, Torin, Lochlan, Kingston & Bronwen
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October 27, 2023
October 21, 2023
In September, Torin was referred to a Pediatric Endochrinologist in order to receive endochrinology clearance prior to his surgery in Chicago. After discussing the ongoing management and the stability of his Hypothyroidism diagnosis (a very commonly-seen hormonal disorder in individuals with Down syndrome), we debated whether to schedule an ACTH (Adrenocorticotropic Hormone) Stimulation Test at the Pediatric Daycare Unit at Victoria General Hospital to check Torin's adrenal response to stress.
About a week after the stim test, we received a call from Torin's Endochrinologist. Much to their surprise, Torin's cortisol levels barely changed AT ALL following ACTH administration. He was diagnosed with Adrenal Insufficiency, also knows as Cortisol Dependency.
It's a HUGE relief that this condition was caught prior to Torin's liver surgery. We quickly begin daily oral Predinisone treatments to help manage his cortisol levels, and we have a modified emergency plan in place that involves immediate intramuscular injection of steroid hormone in the case of a medical illness or emergency. Such an emergency could be a severe head bump, a fever with vomiting, a broken bone or a car accident. The injectable steroid will help Torin's body cope with the stress associated with a traumatic event, keeping his blood pressure and blood sugar levels stable. It could absolutely save his life in the case of a severe trauma.
We also have a modified plan in place for the surgery to fix his Portosystemic Liver Shunt in Chicago at Lurie Children's Hospital this November. He will receive an increased "stress dose" or oral Prednisone (steroid) in advance of his surgery and prior to invasive tests or general anesthetics. Throughout his procedures and surgeries, his cortisol levels will be closely managed and he will receive IV doses of steroids while unconscious.
We are so relieved to be armed with this new diagnosis and with better knowledge of how to help keep Torin safe and healthy: both during his day-to-day activities, and throughout his upcoming international medical treatments. As always, we are extremely grateful to have access to such exemplary healthcare in our city, as well as amazing medical specialists to help manage Torin's health and wellness.
September 22, 2023