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Child’s condition: Crouzon Syndrome, Pyloric Stenosis, Osteochondritis Dissecans

Birthday: May 20, 2003

After countless hours and multiple birthdays and holidays spent at The Hospital for Sick Children (SickKids), Gregory now refers to the hospital as his “second home”. His journey began when he was three weeks of age when he came to SickKids for a CT scan as his pediatrician was concerned about protrusion of his eyes and the shape of his skull.  

Several weeks after his initial appointment, and unrelated to his craniofacial symptoms, he again returned to SickKids for emergency surgery for pyloric stenosis, a gastrointestinal condition where the opening from the stomach to the intestine is blocked. This was the first of many complex surgeries that Gregory would face.

It wasn’t until he was nearly two years of age that Gregory was definitively diagnosed with Crouzon Syndrome, a genetic disorder that causes certain skull bones to fuse and thus affects the shape of the head and face.  At nine years old Gregory’s healthcare team also discovered that he had Osteochondritis Dissecans, which is a bone and cartilage defect in both his knees. He also has additional muscle tone issues that make it difficult for Gregory to perform everyday activities, like standing or writing for extended periods of time.

As a result of his diagnoses, Gregory has undergone 25 surgeries. Among them, 14 were brain surgeries, four major craniofacial surgeries and multiple other expansion surgeries as his Crouzon Syndrome prevents his skull from growing and puts pressure on his brain.  Gregory also suffers from permanent eye damage so he received specially made glasses from SickKids to synchronize the vision in his eyes. However, Gregory remains legally blind due to a lack of depth perception and peripheral vision. He also has a hearing loss, requiring him to wear hearing aids and use an FM system at school.

Despite the medical obstacles he has been challenged with throughout his life, Gregory remains optimistic and attributes much of his positivity to the care he receives while at SickKids. He is grateful for how compassionate SickKids staff are throughout his long stays at the hospital and remarks specifically on their ability to “make light of a serious situation”. He remembers one doctor asking him if he wanted to undergo his surgery sooner or later when they decided that’s what he needed. Gregory says “I don’t think many other hospitals give kids that kind of choice.”

In addition to the support of the medical staff, Gregory has memorable experiences with the therapeutic clowns as well as the Child Life Specialists who have toys, play games and do arts and crafts. Gregory says that if you meet anyone wearing a multi-coloured SickKids lanyard, you’re guaranteed to be meeting someone ‘super-nice!’ They are able to keep his mind off of anything that might be worrying him.

*Note: Gregory sees Dentistry and orthodontics after all of his surgeries with Dr. Forrest*

Child’s condition: Tetrology of the Fallot, congenital heart defect

Birthday: August 22, 2007

Dorothy can’t remember her first experience at The Hospital for Sick Children (SickKids), but the scar on her chest caused her to ask questions and find out. Her mother, Anna, wrote a diary about her daughter while they were in hospital and shared the memories with Dorothy. Now, Dorothy wants to help children in need and says she will always fundraise for SickKids as she grows up.

From Dorothy’s first Pediactrician visit at two days old, she was monitored by her pediatric cardiologist and doctors at Sickkids. She was under observation for a congenital heart defect and they anticipated she would need surgery when she was bigger and stronger.

At 7 months old, her cardiologist decided it was time for Dorothy to go to SickKids for more specialized care. They knew from the time Dorothy was born that she would eventually need open-heart surgery to survive.

“At first we were upset and nervous,” said Anna. “But we knew she was in the best hospital for the treatment she needed, so we felt like we were in good hands.”

SickKids performs more than 85 per cent of paediatric cardiovascular surgery in Ontario. Dorothy was treated through The Labatt Family Heart Centre at SickKids – one of the largest paediatric heart centres in the world where more than 300 doctors, nurses and other highly trained health-care professionals provide the best-in-class care.

Dorothy underwent surgery to treat her underdeveloped heart. With Tetralogy of Fallot, a hole in the lower chambers of the heart allows oxygenated blood to mix with deoxygenated blood so the body receives less oxygen than normal.

Dorothy’s open-heart surgery was successful and she was able to return home 2 ½ weeks later.

She had a minor complication causing her to rely on a G-tube for two months, but has otherwise been healthy. In fact, she no longer requires follow up with SickKids at all. Her appointments are now entirely with her cardiologist closer to home.

“She is so active and energetic; you would never know she had a major heart surgery.”

Dorothy still feels a connection to SickKids and, in 2015, attended Camp Oki for the first time – affiliated with SickKids, Camp Oki is Canada’s first Summer Camp for children with congenital heart disease. She made new friends and is eager to stay involved in the SickKids community through fundraising.

Child’s Condition: HLH, MDS, Complications post bone marrow transplant

Birthday: December 14, 2003

Chatting with Geoffrey is similar to chatting with a physician or someone who has a PHD in biology.  Medical language flows off his tongue with incredible ease. And then one stops and realizes that Geoffrey is a 14-year-old boy.  His scientific knowledge comes from his direct experience as a SickKids patient.

In 2014 Geoffrey began running a very high fever (40°C).  The fever wouldn’t break. He had low appetite and generally was feeling unwell.  His doctor ordered blood tests and learned that his liver enzymes were abnormally high and told Geoffrey’s family to take him to The Hospital for Sick Children.  He was seen by the Emergency Department and there were findings of viral infection. He was sent home and told to return if his symptoms didn’t resolve. A couple of weeks later his temperature was still elevated and he was admitted to the general paediatrics unit at SickKids and during the month-long period during which his fever didn’t subside he had many tests and workups.  With no definitive diagnosis his medical team sent him for a bone marrow biopsy and aspirate. It was then that a diagnosis was made. Geoffrey had HLH (Hemophagocytic lymphohistiocytosis), an aggressive and life-threatening condition of the immune system. In HLH, the immune system gets confused. Sometimes, it works too much, causing excessive inflammation and tissue damage. Other times, the immune system fails to work normally, leaving patients at risk for serious infections.

Geoffrey began treatment as soon as the diagnosis was made.  While he experienced side effects, initially he had a good response to the medicine and had regular clinic visits in rheumatology and haematology.  During a follow up, his blood work showed very low counts and further testing lead to a new diagnosis of MDS, Myelodysplastic Syndrome. From this point on Geoffrey began to be seen by the Bone Marrow Failure Clinic.  He was placed on a new trial drug with a goal of preparing him for an unrelated bone marrow transplant.

A suitable donor was found and in January 2016 Geoffrey went into the SickKids Bone Marrow Transplant Isolation unit.  He spent about a month in the unit. Geoffrey then began to experience many post-BMT complications, the most serious and chronic of these being graft VS host disease.  Since his bone marrow transplant he has suffered serious liver damage and his medical team has been trying to strike the proper balance of medications to battle the graft VS host disease while ensuring that his liver is not suffering further toxicity from the drugs.

Geoffrey has been hospitalized numerous times since 2014, usually for viral infections.  With each admission he is placed in isolation of the bone marrow transplant unit.

SickKids has become a second home to Geoffrey. He says “of course coming to the hospital for the first few times was scary.  Hospitals are scary. But SickKids is great. The doctors are great, the environment is great and they do everything they can to make you feel comfortable.”