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Stories / Patient stories

Alex’s Story: Living better with GRH cystic fibrosis clinic

Alex’s Story: Living better with GRH cystic fibrosis clinic GRHF story Alex’s Story: Living better with GRH cystic fibrosis clinic GRHF story

Cambridge resident, Christena Hudson, never imagined her baby would be rushed into life-saving surgery shortly after birth. But that’s exactly what happened to her son, Alex.

Alex was born with a severe intestinal blockage. If it had ruptured, he could have died.

The surgery was a success and the blockage was removed but shortly after, Christena and her partner, Greg, received news that would change their lives forever. Alex was diagnosed with cystic fibrosis, a fatal genetic disease affecting his respiratory and digestive systems. He would need care for the rest of his life.

For five weeks, Christena stayed in Hamilton, away from Greg and her oldest son, Nickolaus, so she could be near her newborn baby.

When he was ready, Alex was transferred to Grand River Hospital’s neonatal intensive care unit (NICU) where he would complete his recovery. After discharge, he was referred to Grand River Hospital’s cystic fibrosis clinic as an outpatient. Knowing they would be able to go home and get the care Alex needed in his community meant so much to Christena and her family.

The team – Mary Slusarczyk, social worker (back left); Lynn Rogers, dietitian (back right); Leah Harris, physiotherapist (front left); Arlene Valenta, nurse coordinator (front middle); and Dr. Linda Pineau (front right).

Christena recalls the first time they met with Alex’s health care team. They went over every detail of the treatment plan and what the family could expect.

Children with cystic fibrosis are at risk of being underweight because their bodies block enzymes which provide the nutrients they need to grow and develop. Lynn Rogers, a clinical dietitian, is part of the health care team for cystic fibrosis clinic patients. She guides families through nutritional information so they can ensure their child maintains healthy growth and get the enzymes and nutrients they need throughout their life. “Parents feel incredibly reassured knowing we are here to help them at every step,” said Lynn.

As a mother of two, Christena appreciates the support from all the staff as they adjust to their new lifestyle. “The staff here are amazing. They listen to my fears and concerns and go above and beyond when they don’t have to,” said Christena. “It’s made the whole experience easier to deal with and when we visit, I know Alex is in good hands.”

Today, Alex is almost two years old. He is one of 25 children who visit Grand River Hospital’s cystic fibrosis clinic for monthly appointments. During each appointment Alex and his mom meet one on one with each member of the health care team, which consists of a physician, nurse, dietitian, social worker, respiratory therapist, pharmacist and physiotherapist, to discuss medication, diet, exercise and general health concerns. By meeting with each expert, Christena is reassured that her child is living a full and healthy life with cystic fibrosis.

This is the excellent and compassionate care young patients and their families can expect when they visit Grand River Hospital, the largest provider of hospital–based care for children in the Waterloo Wellington area. Parents, like Christena, appreciate that there are specialized services for children and experts in cystic fibrosis. Since children, like Alex, will live with this disease throughout their lives it is important they get the care they need close to home from an early age.