A Dream of Nursing
From the time that she was just five years old, Arleen Hildebrand (Rouw, ‘09) dreamed of becoming a nurse. She always loved the idea of taking care of those in need. It was this dream that led her to study nursing at Trinity Western University.
After graduation, Hildebrand married a man she met from Saskatchewan, and his land became hers. She found work as a nurse and was living out her dream. Before long, she became pregnant. Things seemed picture-perfect. But, at the first ultrasound, they would discover something tragic.
Their baby, Caleb, had hypoplastic left heart syndrome—meaning he would be born with only half a heart.
“It was devastating,” says Hildebrand. “We knew our baby could survive at least until birth, but after that, there’s three surgeries he needed to go through to be able to function at all.”
It was a scary time of uncertainty.
Caleb’s Early Years
After Caleb was born in 2012, he had a successful first surgery. But there were problems with the second surgery. This meant he would have to go on the infant heart transplant list. Infant heart transplants are fairly new, experimental, and complicated. The donor needed to be a child of the same age and had to match several markers. On top of that, there weren’t many available.
But against all odds, a suitable heart was found. At 9 months old, Caleb had a heart transplant.
“We only waited three months, which is phenomenal,” says Hildebrand. “We were expecting to wait two years. This was definitely God’s timing because he was becoming very sick. Before the transplant, Caleb couldn’t lift his head or wave. All he could do is lay there and smile. He was so sick, and caught everything.”
Today, Caleb is five and a half and is doing very well. But he still has many challenges ahead. He needs bloodwork every month for the rest of his life because he’s on low dosage chemotherapy, to keep his body from rejecting the heart. This puts him at risk for every illness.
“In the beginning it was really stressful. We were trying to keep him alive day by day. Now it’s become our new normal,” shares Hildebrand. “We came to the conclusion that we would pray for God’s grace to endure whatever would happen. We didn’t want to lose our faith over this.”
Although they had more peace about things, the Hildebrands still had more to endure.
The Next Trial
Jacob was born to the Hildebrands in 2015. Though he seemed healthy at first, they quickly discovered something was wrong.
For the first two years of his life, Jacob couldn’t sleep for more than five minutes to an hour without waking up screaming. This took a toll on the already strained Hildebrand family.
“It was probably the hardest thing I’ve ever gone through. Sleep exhaustion at that extreme level is torturous,” says Hildebrand.
It turned out that Jacob was allergic to just about every type of food. To date, they only know of ten types of food he can eat without issue.
Jacob’s condition (called FPIES) turned simple things like crawling into an issue. Touching crumbs on the floor or toys other kids played with would cause him to get sick.
“It was completely isolating,” says Hildebrand, who had to give up her job as a nurse in order to take care of her kids full-time. “We couldn’t put him in a nursery. We couldn’t even go to church for a long time.”
During this season, Hildebrand felt angry most of the time. She couldn’t understand why this was happening to her family.
“I was trying to cope, but was really angry at God,” she admits. “But he is a God of grace and understanding, and nothing can separate us from His love.”
Isaiah 54:10 is a verse she and her husband clung to in this time.
Living each day grateful
In 2018, the Hildebrands had their third child, Helana. It turns out she has the same condition as her brother, Jacob.
“Right now, I’m just eating what I feed Jacob, to help her,” Hildebrand says.
Because she has two children that need to be tube fed—and she is on a restrictive diet herself—meal times can be quite stressful. But the family takes comfort knowing that this is a season, and they’re told Jacob and Helana should grow out of these allergies when they get older.
Even though life hasn’t turned out as they expected, and their children continue to struggle with health issues, the Hildebrands live each day grateful.
“With Caleb and his heart, we learned to trust God’s will. To pray that his will be done instead of putting our trust in a positive answer to prayer for healing and life for Caleb,” says Hildebrand. “We saw firsthand that God does not always answer with healing or life for an ill child. But His will is done. And we found comfort and peace in that.”
Although this isn’t what she’d expected to do with her nursing skills after graduating Trinity Western, Hildebrand believes the things she learned at the University have been essential in helping her cope both with the medical and spiritual aspects of her life today.