Little Girl Living In Stollery

Hi, my name is Lesli and this is my three year old (as of July 10th, 2016) niece Madison Shepherd who is the strongest, happiest most energetic little girl I have ever had the pleasure to know. You'd never know by how much she giggles at everything or how hard she tries to keep up with all the other kids. Here’s her story:Madison was about 8 months old when her parents initially noticed she had a curve in her spine; later confirmed by an x-ray before she was hospitalized for pneumonia at the age of one. She’s had pneumonia another 3-4 times since then (no further hospitalizations) which her parents believe is caused by her compressed lung. Why is her lung compressed you ask, well read on…After about a year of waiting for Madison to get a referral/appointment to a specialist, Madison, her mother Sharon, father Bryan and 2 older sisters (Caitlin and Brooklyn) traveled from Fort St. John, B.C. to Edmonton, AB. to see a spine specialist at the Stollery Hospital. Madison’s initial x-ray, CT scan and MRI determined Madison has a severe case of Congenital Scoliosis and Congenital Kyphosis (descriptions of both can be found on the Scoliosis Research Society’s website http://www.srs.org/professionals/online-education-and-resources/conditions-and-treatments). In addition to her kyphosis curve, her scoliosis curves (x2) are caused by hemivertebrae; her upper scoliosis curve was approximately 110 degrees and her lower scoliosis curve was approximately 60 degrees at diagnosis. Because of the severity of her curves, the options were surgery or nothing given current medical knowledge (ie. bracing and other treatments would not be effective). During her diagnosis they also found Madi had a tethered spinal cord; a neurologist consult confirmed Madi’s tether would need to be released before they could start straightening her spine to prevent further complications. A week later they returned to Edmonton and completed a successful surgery to release her tethered spinal cord (April 2015). Madi and her parents then had 3 more return visits to Edmonton to 1) complete the 6 week post-surgery follow-up, 2) meet with pulmonary and cardiology specialists, and 3) complete a sleep study.In January 2016 Madison underwent surgery again to have a Vertical Expandable Prosthetic Titanium Rib (VEPTR) put in on her left side. The VEPTR will help open up her ribs so her lung and other organs have a chance to grow. At minimum, Madison will require a rod lengthened every six months (meaning more surgeries) for the next 10-12 years or until she is done growing; at that point they will discuss a final surgery which may include a nearly complete spinal fusion. The VEPTR treatment for Madi is not aimed to treat her spine, but to treat what is termed “Thoracic insufficiency syndrome” (there is a good explanation on the website mentioned above under congenital scoliosis).Madison had her first adjustment in June (2016) as expected. About 4-5 weeks after the surgery Madison’s parents noticed a lump in her neck/shoulder area which seemed abnormal. Although her medical team thought it was just the top of the VEPTR device, her parents noticed her shoulders were also uneven again and she was leaning to her left side more than what she should be after the adjustment. They were asked by the medical team to come back to Edmonton for more x-rays and a follow-up. After another CT scan and a weekend wait for the results, they found out the VEPTR device had sheared through the 2 ribs (ribs 2&3) where the top of the device was attached. Amazingly, although both ribs were broken and the VEPTR device was loose inside her body (the bump in her neck/shoulder area), Madi still powered through any pain she might have had with a smile on her face and rare complaint of “my back hurts”. This amazing little girl just wanted to be a normal kid! The news was heart breaking for her parents and her medical team; although a complication is expected with the VEPTR procedure, something this severe and this soon in the process was rare and not anticipated. After Madi’s scoliosis specialist presented several options to her parents concerning the next course of action, discussion ensued to determine what was best for Madi in the short and long term. It wasn’t a simple decision as there were long term effects with each option that needed careful consideration. Eventually after a long stressful day of discussions knowing what they were going to allow the Dr’s to do to their baby, her parents determined Madi was in very good hands and a course of traction was the best course of action. This option would 1) allow the 2 ribs time to grow back, 2) straighten her spine to reduce the side to side and front to back pressure on her spine and the VEPTR device, and 3) because this will pull her body and her left side upwards, continue to provide space for her organs to grow. Halo traction consists of a halo ring screwed into the exterior of Madi’s skull and weights gradually applied (up to ½ her body weight hung behind her using a rope and pulley system) to apply pressure to her spine gently pulling it upwards. Although the technique is somewhat primitive, medically it is still very successful and often used in young and old alike. When traction is complete and Madi’s ribs have healed, she will require another major surgery to hopefully repair the VEPTR device (1 week post operation recovery time for that surgery). If the VEPTR is no longer a viable option after the 2-3 months wait, then growing rods (which come with their own set of complications) are the next logical step. Her parents are hoping and praying that option A will work.Long story short, Sharon and Madison have to spend the next 2-3 months in the Stollery Hospital in Edmonton while Bryan has returned to FSJ (with the 2 oldest girls) so he can continue to work and support their family. Sharon usually runs a day home to help make ends meet which she had to give up to care for Madison, meaning a loss of income to their family. Not only is it stressful having their family turned upside down, but their youngest will continue to need many more surgeries before she is better. The costs from constant trips to Edmonton just keep adding up.This little girl had two broken ribs and a metal rod starting to stick out of her shoulder and somehow still found a way to fight through and be a kid. No kid deserves to lose they childhood. No kid should miss their birthday by being in the hospital. No parent should have to see what Sharon and Bryan have seen their daughter go through. No mother should have to miss the first day of kindergarten for her middle daughter. And no siblings should ever be apart.
I wanted to share the story of what this family has been and will continue to go through maybe in the hopes that they could get some much needed help.
Thank you so much for your time!