When Julia Berardi was born in 2013, her parents didn鈥檛 expect any complications.
They鈥檇 already had two healthy children. 鈥淵ou sort of expect this to go pretty smoothly,鈥� recalled her mother Jody Berardi in an interview with CTVNews.ca.
And it did at first. Julia was 鈥減ink and healthy,鈥� weighing in at eight pounds and five ounces. But they soon noticed irregularities. Jody was only able to nurse her for a brief time before Julia would fall asleep for five-hour stretches. When they took her home two days later, the baby projectile vomited in the car. As the patterns worsened to a point where they couldn鈥檛 wake her up, Julia was readmitted to the hospital.
鈥淲e didn鈥檛 know what was going on. It鈥檚 even worse when you don鈥檛 get answers,鈥� said father Alfredo Berardi.
A doctor at the Hamilton Children鈥檚 Hospital determined that Julia had a metabolic disorder that affects one in 70,000 children. Julia couldn鈥檛 metabolize protein because of the rare genetic condition called urea cycle disorder. The disorder causes the highly toxic substance ammonia to build up in the blood and threatens brain damage, coma and death.
For the first few years, physicians were able to manage Julia鈥檚 disorder with a highly restricted low-protein diet and medication. But in February of last year, Julia contracted a gastrointestinal bug and her parents had flashbacks to 2013.
鈥淪he was throwing up and right away she鈥檇 go to sleep,鈥� said Jody. 鈥淗ere鈥檚 a rerun of what happened when she was born.鈥�
But this time, her condition was bad enough that physicians suggested it was time for Julia to get a liver transplant. They initially opted for a transplant from a living donor, in which doctors take a portion of an adult liver, because an organ might not have become available in time. But just a couple weeks after the living donor was approved, they got the call that a deceased child鈥檚 liver was available.
鈥淚 spent just as much time thinking about the other family as I did about our own child,鈥� said Jody. 鈥淎s a mother, you don鈥檛 want to hear the words that there鈥檚 a child鈥檚 liver available.鈥�
Since the 10-hour transplant operation near the end of 2018, Julia鈥檚 disorder has been 鈥渆ffectively cured,鈥� her parents said, though she will be on an immunosuppressant drug for the rest of her life.
Her diet is no longer restricted. In fact, her first meals after the transplant were McDonald鈥檚 Chicken McNuggets and scrambled eggs.
鈥淚t sounds so silly in a normal person鈥檚 life, but our life was anything but normal,鈥� said Jody. 鈥淔or her to have scrambled eggs and eat Chicken McNuggets is huge. We were given this huge miracle of a liver, but it鈥檚 all these small miracles that we relish and hold onto.鈥�
Julia鈥檚 speech, which had been slightly impaired by the condition, has improved to the point where she seems to have matured suddenly and she speaks in full sentences. For her parents, understanding that their child鈥檚 health was dependent on the death of another child has added to the 鈥渉ugely emotional experience.鈥�
鈥淗ere鈥檚 Julia thriving and doing so well and another family has lost their child. That will never be lost on us,鈥� said Jody.
Now they鈥檙e ready to embrace an unrestricted future. Before the transplant, the family couldn鈥檛 go anywhere without a metabolic specialist. Now the Berardis feel no such restraints in planning their daughter鈥檚 life and the family鈥檚 next adventures. Julia and family have a renewed sense of freedom, though they aren鈥檛 quite out of the six-month risk window for transplants, said Alfredo.
鈥淎fter that it鈥檚 gangbusters,鈥� he said. 鈥淚t鈥檚 completely wide open.鈥�
