After a normal and healthy pregnancy, Jessica and Justin welcomed their daughter Charlie during the summer of 2020 at her local hospital in Woodstock, New Brunswick.
When Charlie was born, her care team classified her as a “floppy baby,” – meaning she had low muscle tone. Because of this, she was transferred to the Neonatal Intensive Care Unit (NICU) in Fredericton.
Charlie began experiencing seizures in the NICU, and her care team noticed she had different facial features that indicated a possible underlying condition. Charlie spent the next three months receiving care and undergoing various tests, including genetic testing through the IWK.
The genetic testing results revealed that Charlie had a rare chromosome abnormality called Chromosome 2q duplication. This condition can cause cognitive and developmental delays. They also found three large holes in Charlie’s heart.
At three months old, Charlie was discharged from the Fredericton NICU but continued to be on oxygen at home due to having pulmonary hypertension. It’s a type of high blood pressure that affects the arteries in the lungs and the right side of the heart.
Shortly after returning home, she travelled to the IWK to undergo open-heart surgery to repair the holes in her heart.
Thankfully, the surgery was successful, and Charlie recovered in the IWK’s Pediatric Intensive Care Unit (PICU). Because Charlie’s heart was working extra hard after the surgery, she had to spend longer than expected on a ventilator to help her breathe.
They transferred Charlie to the IWK’s Medical, Surgical and Neurosciences Unit (MSNU) a week after her surgery. She had an orogastric (OG) tube to help prevent vomiting and aspiration, improve ventilation, and relieve her swollen abdomen. She also had a G-tube inserted through her belly for feeding.
The diagnosis and surgery were a lot to process for Jessica and Justin, but they felt so supported by the team at the IWK. “The IWK to me means Charlie’s life,” says Jessica. “I will never forget the love and care we received. Everyone treated Charlie like one big case and was unified in their teamwork to ensure she was doing well.”
Charlie, who turns two in August 2022, has many different needs stemming from her genetic condition. She visits the IWK often for follow-ups with cardiology, ophthalmology, orthopedics, otolaryngology and audiology.
“Charlie is doing great,” says Jessica. “It makes me so happy to see how far she’s come. I know there are endless possibilities for her because we have endless support.”
