Malia and her parents, Cheryl and Ian, had a long journey ahead of them before Malia even came along. When Cheryl was just 12 weeks pregnant with Malia, an ultrasound showed an omphalocele — a condition in which the organs form outside the body. The outlook was not good.
A hospital in Toronto referred Cheryl to London Health Sciences Centre, where she entered the care of Maternal-Fetal Medicine specialist Dr. DeVrijer. Cheryl and Ian recall that Dr. DeVrijer wouldn’t “candy-coat” things and committed to providing as much information as possible so that they could make the best decision possible. With open, informed discussions, the couple opted to move forward with the pregnancy.
As expected, a troubling, stressful pregnancy followed. Cheryl’s care team ran test after test, including a fetal echo test to look for heart defects and genetic testing — all of which came back normal. However, one scan appeared to show Malia’s brain hadn’t formed properly, causing a few weeks of concern until another scan showed her brain was fine.
Finally, at 37 weeks, Cheryl gave birth to Malia, who was immediately whisked away to the Neonatal Intensive Care Unit (NICU). With trouble breathing, she needed oxygen support and CPAP. And unfortunately, due to her omphalocele, Cheryl and Ian couldn’t hold their newborn daughter.
Four days after her birth, Malia underwent surgery to correct her omphalocele, and thankfully, Cheryl and Ian didn’t have to wait much longer to hold Malia. Two weeks after her surgery, Malia’s care team determined she was strong enough to be transferred to a special care nursery. Three days after that, with midwifery support, Malia went home.
The transition to home care, unfortunately, proved difficult. Malia showed further challenges with breathing, and when she ate, she’d spit up a troubling amount. While her paediatrician suggested acid reflux medication would help, Cheryl decided that, given the likelihood of Malia being dehydrated and underfed, she should go to the emergency department at Children’s Hospital.
The experts at the emergency department immediately got Malia on oxygen and IV fluids before running an X-ray, which found a diaphragmatic hernia — a hole in her diaphragm had allowed her bowels to slip through and put pressure on her heart and lungs.
Malia needed emergency surgery, but within days, she was doing better, eating well and gaining weight.
As if she hadn’t been through enough, Malia’s health journey didn’t end there. At six months old, doctors found her kidney had malrotated, meaning that she could be more susceptible to uterine tract infections. Another scan found her bladder was three times the size it should be. And she’s had several serious bouts of pneumonia due to subglottic stenosis, a narrowing of the airway below the voice box.
Malia is followed by specialists from several different areas of care and has become a regular at Children’s Hospital, often supported by Child Life. She gets a blue popsicle — her favourite! — after each visit, and she spends much of her time there using a little doctor’s kit to give her stuffies the same treatments she receives.
Cheryl can’t say enough nice things about Malia’s surgeon, Dr. Lam, and her respirologist, Dr. Price. After running into Dr. Lam during a visit to the emergency department, Dr. Lam took over with the doctors there to relieve Cheryl and Ian from having to explain Malia’s story once more; and Dr. Price “has been a really strong advocate for her.”
“You can just tell that they both really care,” Cheryl says.
She and Ian are thankful for Children’s — they’re well aware that they wouldn’t have Malia without the hospital’s expert care. “We’re very lucky that we have such a great hospital with so many specialists so close to home,” Cheryl says.
The focus now is helping Malia just be her best Peppa Pig-loving, swimming-and-outdoor-playing self. She’s receiving support from TVCC’s occupational physical therapists and speech language pathologists, and continuing always to move forward, as resilient as ever.
This holiday season, you can make a real difference to children and families like Malia’s with a gift to Children’s Health Foundation. And right now, if you choose to make a gift, you’ll be making even more of an impact than you know. Thanks to the Charabin Family Match, a gift of $50 becomes $100, and a gift of $100 becomes $200. Think about how many lives would be changed as a result. Hope lives at Children’s because of you.
