Stories

Feeding Tube Awareness Week, observed from February 2 to 8 this year, aims to increase the understanding of feeding tubes and their critical role in supporting the health and well-being of children with medical complexities. The week promotes best practices, innovations and the lived experiences of families who rely on tube feeding.

Founded in 2011, this initiative has grown into a nationwide movement, with SickKids Hospital launching the first Feeding Tube Awareness Week in Canada in 2020. This global observance, held annually in the first week of February, highlights the life-saving impact of feeding tubes and helps challenge the stigma surrounding them. Families come together each year to share stories and raise awareness of their positive influence on patients’ lives.

Henley’s story

Henley lives with his parents, Josh and Laura, and their two dogs, Riley and Zoe. At seven months of age, Henley was diagnosed with Kabuki syndrome, a rare genetic disorder that affects multiple parts of the body. In Henley’s case, his diagnosis primarily affects his feeding abilities and hips. The first sign that hinted at something being amiss began when he was not feeding well nor gaining weight. When he was two months old, he received a failure to thrive diagnosis and required life-saving intervention through the insertion of a Nastrogastic (NG) Tube which was five months later replaced with a Gastrostomy Tube (G-Tube). 

Josh and Laura’s journey started before Henley’s conception as he was a surrogate baby conceived through an egg donor. Henley was a baby that the family truly desired and waited for patiently. Therefore, despite doing everything they could with prenatal genetic testing through the fertility clinic, his genetic disorder was a shock.  

Laura, also a professional Registered Nurse, admits that the decision to insert a G-Tube was harder to accept than the actual Kabuki syndrome diagnosis itself. “Overall, it was a lot to process, but with the G-Tube, as a mom and nurse, it seemed so permanent. We tried to avoid it but when looking at the pros and cons, and the thought of not nourishing your child at all, the G-Tube made the most sense,” says Laura. The acceptance piece took time but after processing everything, it was the best decision for Henley and the whole family as it allowed him to get to where he is now.  

Henley’s parents worked closely with his nursing team to educate themselves on how to use the device correctly and to best meet Henley’s needs. Laura explains that “it was a learning curve. We had to know what medications and food/formula could be given through the G-tube, how to vent the tube (opening the tube to allow trapped gas/air to escape and massaging his belly), organize a caddy with syringes, prevent Henley from pulling the tube out and work around a new feeding schedule wherever we were. Henley had a G-Tube backpack which made it easier on the go.”  

Henley’s G-Tube journey has recently ended with the successful removal of his G-Tube. After swallowing assessments and being guided by a dietitian, his parents were able to safely introduce oral foods for him. Through a gradual wean of slowly decreasing his G-Tube feeds, he started to show signs of hunger and began eating purees and drinking water. Although they now face different challenges, he is primarily orally fed.  

Laura acknowledges that Henley’s success story may not be the same for others and feels very fortunate to have reached this point. Her advice to other parents who may be at a crossroads debating the use of a G-Tube for their child is to “look at what it can do for your child. Let your child lead the way through the journey by following their cues and trusting the medical team in the process. The harder decision is sometimes the right decision, even if at the time it is hard to accept. Educate yourself the best you can, talk to other parents with similar journeys for added support and ask questions – there are no silly questions, you need to be 100% comfortable with what you are doing. Finally, try to see the process as a positive experience knowing that [the G-Tube] is helping your child.” 

Henley is now two years old and nine months. He eats orally and his favourite foods are strawberries and cheese and crackers. Following a simple procedure in Fall 2024, Henley had his G-Tube removed and has healed well. 

World Prematurity Day is a day to raise awareness of premature births and an opportunity to work with partners around the world to prevent it. The average pregnancy lasts 37 to 42 weeks, marking 37 weeks of pregnancy as reaching full-term and births before 37 weeks are considered preterm. Nearly 8% of all Canadian babies are born prematurely. Preterm babies have smaller body lengths, lower birth weights and are at risk for increased health and developmental challenges.

The likelihood of a Neonatal Intensive Care Unit (NICU) stay is high, and the duration of the stay will depend on the length of the pregnancy and the health of the baby. Many of these preterm babies will go on to have physical, communication and developmental needs. There is also a huge need for support for parents of preterm babies who will experience the difficulties of NICU life and the possibilities of navigating new medical diagnoses, posing a risk for both short-term and long-term mental health challenges. On World Prematurity Day, we wear purple to show our support.

Client Story:

“Connor was born 13 weeks premature at 27 weeks gestation, weighing only 2.7lbs and began his journey in the Neonatal Intensive Care Unit (NICU). The very first few days were scary as doctors were uncertain if he would survive the first 48 hours. His lungs were so underdeveloped he was placed on an oscillator jet to help him breathe over the next couple of weeks. During this time, we were not able to hold Connor and physical contact was kept to a minimum because of how sensitive his skin was. During this time, doctors were keeping a close eye on his head circumference as the size of his head was growing at a faster rate than it should have been.

After many head ultrasounds, it was discovered that Connor had suffered bilateral grade 3 and 4 brain bleeds resulting in Hydrocephalus. Hydrocephalus is a condition in which an accumulation of cerebrospinal fluid occurs within the brain. This typically causes increased pressure inside the skull. It was determined that Connor would need surgery to place a VP shunt to help with the draining of the fluid buildup. At this time, there was a major concern he was still too little and weak to undergo such a surgery, so doctors decided to wait and continue to monitor his head circumference on a week-to-week basis until he was both strong and big enough to undergo the surgery.

A month after birth, Connor was transferred to Sick Kids Hospital to undergo surgery to place a VP shunt, but before they could perform surgery, he became extremely ill. Connor had developed Necrotizing Enterocolitis (NEC), an infection which can be deadly for premature babies. Luckily, it was caught quickly and only needed to be treated with medication. At 34 weeks gestation, Connor had his surgery and VP shunt placed. After 120 days in the NICU, he was able to come home.

Due to Connor’s prematurity, he was placed on a waiting list for early intervention. When Connor was only eight months old, he started physiotherapy (PT) and occupational therapy (OT) at Grandview Kids with two amazing therapists! At 12 months, he was diagnosed with right-sided Hemiplegia Cerebral Palsy. When it came to hitting his milestones, he was a little behind, but he ended up meeting them in time and with hard work. He wore ankle-foot orthotics (AFOs), received Botox injections to weaken the spastic muscles and had many hours of PT and OT. In 2021, Connor had Selective Dorsal Rhizotomy (SDR) surgery to remove the spasticity from his legs. Connor is a smart, funny and strong warrior who is now nine years old and loves Elvis, Marvel, Star Wars and video games. He accomplishes anything he puts his mind to; he doesn’t let anything get in the way of what he wants!”

World Cerebral Palsy Day, which occurs annually on October 6, reminds us that this disorder impacts over 17 million people. Many people wear green to celebrate World Cerebral Palsy (CP) Day.

There are more than 17 million people in the world living with CP and it is one of the most common physical disabilities affecting the most vulnerable among us — children.  At Grandview Kids, clinicians in developmental paediatrics, occupational, physio, recreation and speech-language therapies support children living with CP and work with their families.

“Alex is a CP level 4/5 warrior. Alex is unlike any other kid I know. It does not matter what adversities he faces in life he is ALWAYS happy, ready to face each day, never complains and is always so positive. He is our happiness prescription, one look at him and you are smiling too! Alex uses a range of equipment to help him through his day to the best of his ability. Some of these include a power wheelchair, AFO’s, nighttime leg braces, bath seat, walker, stander, lift system, communication device, adapted bike and adapted toboggan for winter fun. This equipment allows him to be as mobile as possible, fit in with his peers and give him the best outcome possible.” – Stacey P.

“Hello! My name is Brad. Today is World Cerebral Palsy Day. As someone who lives with CP, I choose to embrace this day rather than dwell on it. No doubt, having CP has been a tough journey, but I think it has made me an unstoppable force. Through countless hours of therapy and hard work aided by Grandview Kids staff, I have defied the odds and proven every person who doubted me wrong! I am also fortunate to call myself a Grandview employee for the past five years. I love that I’m able to give back to the organization that has given me so much. I get to help others with CP, and varying disabilities realize there is a light at the end of the tunnel and be proud of every victory, big or small because living with Cerebral Palsy does not define you as a person. The possibilities and potential in life are endless if you believe!” – Brad S.

Grandview Kids serves many children and youth with various medical diagnoses. A large population of these children and youth have disabilities that are sometimes referred to as “invisible disabilities.” According to the Invisible Disabilities Association, an invisible disability is “a physical, mental or neurological condition that is not visible from the outside, yet can limit or challenge a person’s movements, senses or activities.”

Lindsey is a Grandview Kids parent, Family Advisory Council (FAC) member and 10-year School Community Councils (SCC) chairperson. She shares how her family has learned to understand and support her 10-year-old daughter, Zayla, who has attention-deficit/hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) and the unique challenges that come with a disability with invisible symptoms.

Lindsey and Alex, along with their two daughters, Zoey and Zayla, are a close-knit family that enjoys going to Canada’s Wonderland for thrilling rides and American border crossing for shopping trips. At the age of four, Zayla was diagnosed with ADHD by her paediatrician and was referred to Grandview Kids after exhibiting signs such as lengthy meltdowns and delayed milestones. Though her parents recognized Zayla’s difference at an early age, they were told she did not meet enough markers to receive an ASD diagnosis until a recent reassessment done in August 2023.

Soon after her ADHD diagnosis, Zayla started accessing Occupational Therapy at Grandview Kids, which would be a learning journey for her whole family. She is highly intelligent, and her family noticed quickly that “any tools she was provided, she was willing to keep in her toolbox and utilize.” She is hyper-aware of her behaviours, seeing her lack of impulse control, and shows lots of empathy for how she’s acting but is unable to control it. Her occupational therapist was now someone speaking a language she understood, making it possible for her to control/regulate herself.

During the COVID-19 pandemic, she also had virtual recreational therapist sessions, which helped her learn how to navigate transitions. Socializing and making friends always came quickly, but learning to do things her friends wanted to do that she didn’t was a challenge. Zayla’s enthusiasm in therapy is evident as she recently achieved all the goals she set with her recreational therapist, Julia.

With Zayla’s recent ASD diagnosis, her family found getting a reassessment challenging but advocated for their daughter so that she could receive the appropriate support. Her parents learned that “sometimes it takes long for people to listen to you. We’re not doctors and don’t know the language/road to get this done.” Although they would have preferred an earlier ASD diagnosis to have opened doors for early intervention, they are glad that they are starting now and hope to receive Ontario Autism Program (OAP) funding before she ages out.

Having a child with an invisible disability means that her family sometimes faces judgment by others through sideways glares and unwarranted comments because of Zayla’s behaviour. These encounters were more complex when she was younger, but now, they have decided as a family to stop apologizing for things and have found that these moments can be opportunities for dialogue. Zayla is uniquely her, and her diagnosis is just a part of her but does not define her. Lindsey knows they “…are very lucky in [their] community.” Zayla is surrounded by fantastic friends and a great school where they prioritize making kids feel safe. Growing up in the Grandview Kids community provides an extra layer of protection and safety, knowing therapists are available when help is needed.

Written by a Grandview parent

My husband and I are proud parents to three beautiful children, ages seven, five and three months. There is never a dull moment in our house, and we wouldn’t change one bit of it.

Seven years ago, our beautiful baby girl, Ariana, was born. She was the image of perfection and everything we could have dreamt of. Shortly after birth, she was having trouble breathing and was put in the neonatal intensive care unit (NICU) for the first time. As new parents, we were terrified but had all the faith in the world that she would be okay and we would be taking her home in no time.

The next day, the paediatrician walked in to inform us that her breathing was under control, but he also let us know that the breathing issue was the least of his concerns. At this time, we received the very unexpected news that Ariana was born with Down Syndrome and had a hole in her heart.

Having so much information thrown at us all at once was indescribable. We had a diagnosis, health complications, appointments to rush to and juggling just being first-time parents. To say the first three months of Ariana’s life were overwhelming is a complete understatement. It was incredibly isolating and daunting trying to navigate this world alone.

This is where our journey with Grandview Kids began. I remember the first time I walked through the doors, not knowing what to expect. I was greeted with smiles from the staff, eager to meet our sweet girl. It was the first time anyone said, “Congratulations.” I could finally breathe again, knowing that we had found our place—a place of acceptance, love and support.

Ariana has received many services through Grandview Kids, including Physiotherapy, Occupational Therapy, Speech-Language Pathology, Medical Services and Social Work. Ariana has moved mountains with her development and continues to blow us away daily. She has come from being non-verbal to now speaking in sentences. She holds her pencil perfectly and is practicing writing her name by herself. She runs, jumps, rides a bike and swims like a fish. I could go on and on about everything she can do today that took a lot of practice, determination and guidance from Grandview Kids.

My family would not be where we are today without the help of Grandview Kids. Clients and caregivers in the Durham Region can utilize life-changing programs and services that changed my little girl’s life.