Before Elena was born, her family already knew she would have to fight for every breath. At Esther’s 20-week ultrasound, doctors discovered Elena had Congenital Diaphragmatic Hernia (CDH), a rare and life-threatening condition that can leave babies with small, underdeveloped lungs. What followed was a journey marked by uncertainty, extraordinary healthcare at the IWK, and a little girl whose strength continues to defy expectations.
Because of her condition, Esther’s pregnancy needed to be closely monitored by the IWK’s Fetal Assessment and Treatment Centre to improve the outcome for Elena at birth.
When Elena was born, she struggled to breathe and needed to be rushed to the IWK’s Neonatal Intensive Care Unit (NICU) for urgent, life-saving care. She was placed on a ventilator and an ECMO machine, a form of life support that temporarily takes over the work of the lungs and heart. She also needed many blood transfusions.
Elena’s highly specialized care team were able to stabilize her before transferring her to the IWK’s Pediatric Intensive Care Unit (PICU) for further care.
During this time, Elena needed multiple surgeries and procedures, including an operation on her diaphragm, and she also needed a tracheostomy. As her health improved, she and Esther were transferred to the IWK’s Pediatric Medical Unit (PMU), where her care team worked to strengthen her tiny body.
While in the PMU, Elena was diagnosed with hydrocephalus (the abnormal buildup of cerebrospinal fluid deep inside the brain). Elena needed a Ventricular Assist Device (VAD), a surgically implanted device that helps remove excess fluid.
Her shunt surgery was the last major surgery she would endure for the time being, and the IWK started supporting Esther in setting up round-the-clock home nursing as Elena was still on the ventilator.
In the summer of 2022, Elena was able to come off the ventilator and breathe on her own, while still assisted by an oxygen machine. Although she was still dependent on oxygen, a feeding tube, and a tracheal tube, she could finally go home in September.
At home, Elena received physiotherapy, speech therapy, and occupational therapy. Home nursing care was eventually arranged to assist with Elena’s extensive care needs. Elena’s care team changed her feeding tube to a GJ tube. A month later, she was completely off oxygen.
In April 2025, the trach was removed completely, and Elena was breathing on her own. This was a major transition in Elena’s care.
Although things were looking up, things took a serious turn in May 2025, when Elena had a seizure. Doctors diagnosed her with epilepsy and, soon after, cerebral palsy.
In November 2025, Elena tested positive for three separate viruses, and her shunt was infected and needed to be replaced.
Elena’s road ahead is not an easy one, but her resilience is evident with every challenge she has had to overcome. She’s making strides with physiotherapy and only needs her wheelchair part-time, and she is cognitively catching up to other children her age.
When thinking of her daughter, Esther is at times speechless. “In the moment it’s easy to focus on the things she ‘can’t’ do, but when I take a step back, I’m amazed at how far she’s come,” says Esther. “She’s a little warrior.”
Elena, now almost five years old, keeps defying the odds and pushing the boundaries of what was thought possible thanks to the specialized care she received at the IWK.
