When Katie Jones and Angel Gonzalez first learned that their child had been born with a unique condition, it was unexpected. Emilio was born with Microtia, a congenital abnormality where one or both outer ears do not develop properly in utero, affecting only 1 in every 10,000 to 20,000 live births. Together, they navigated the uncertainty with strength and determination. Two years later, when they decided to have another beautiful baby boy named Adrian, they were shocked to discover that he was born with the exact same condition as Emilio.
Their story, though exceptional, is not unlike that of any parent who learns that their child has a disability. It’s not news anyone wants to hear, but the journey to understanding and supporting a child with special needs is profound and telling.
“You never think your child will be born with a hearing deficit,” Katie recalls. “Is he going to be okay? What do we do now? All they could tell us was that Emilio couldn’t hear.”
Katie and Angel didn’t find out about Emilio’s condition until he was born. There had been no cause for concern during pregnancy. Katie was induced because he was seven days past his due date, and two days later, he was born. As soon as he was delivered, they noticed he had large skin tags by his ear and that his ears were misshapen.
“When they handed Emilio to me, they said, ‘Your son can’t hear,’ maybe five minutes after he was born,” Katie says. “At first, we didn’t know what the tags were. We didn’t know what was going on.”
They couldn’t run a regular hearing test on Emilio, and they weren’t even sure if he could hear at all. It was a difficult time for the couple, especially with it being their first child. Despite blood tests and ultrasounds showing no issues, they were suddenly faced with a reality they hadn’t prepared for.
One of the indicators associated with Microtia can be benign growths on the skin, but the doctors weren’t initially concerned. They conducted several tests, including an electrocardiogram (EKG), which revealed a slight heart murmur in Emilio, though it didn’t seem serious. Fortunately, they were referred to Buffalo Hearing & Speech Center for further evaluation.
They met Michelle Dubé, the head audiologist at BHSC, who conducted an Auditory Brainstem Response (ABR) test. This test evaluates hearing thresholds and the auditory neural pathway, crucial for determining the type of hearing loss and the best treatment options. They also saw an ENT (Ear Nose and Throat Doctor) and a geneticist, and more blood work was done. Although uncommon, Emilio had started producing his own blood while in utero, leading to anemia. He has since improved, but they plan to see the geneticist again to investigate if his condition is related to some of the heart issues found in Adrian.
Through various tests, they discovered that Emilio had significant hearing loss in both ears. Emilio can hear but not clearly. Speech can feel muffled to him, and it can be difficult for him to determine the direction of sounds. However, despite these challenges, Emilio’s hearing is surprisingly good (Go back – with use of the Baha)
The doctors left extra skin around Emilio’s left ear in case he opts for ear reconstruction surgery as he grows older—a choice Katie and Angel want him to have.
Advocating for their children has been a learning process. “The day Emilio was born, we wish we had advocated more,” Katie admits. But it’s challenging when you’re unsure where to begin. Angel dove into research while Katie set up appointments. “Two months in, we really pushed for Emilio to come to BHSC early. They told us he would be referred to Early Intervention.”
Microtia is rare and usually affects only one child in a family, so they were told that the likelihood of their second child having it was slim. Yet, against the odds, Adrian was born with the same condition. “There was no asymmetry, no cleft palate or lip, no other issues. We were told it was slim to none,” Katie laughs.
“Looking back, I wish we had advocated more for ourselves,” Katie says while Angel adds, “You forget about it sometimes; you look at them, and it’s just a part of your life.”
As parents, they’ve grappled with questions about whether they’re doing enough. “His progress has come in waves,” Katie says of Emilio. “His speech isn’t where it should be. He started saying words, then regressed. At two and a half, he still can’t say a full sentence—can we do more?”
At home, Emilio speaks, but it’s easy to compare his progress to other kids. At 18 months, he was one of the youngest in early intervention, and as a parent, you wonder, “Where do we go from here?” Trusting the process and relying on those around you becomes essential.
When Adrian was born, everything seemed typical, just like with Emilio. “You hope everything will be fine, but I got very nervous right before the birth,” Angel admits. “He had a skin tag on his cheek, and I kind of froze. You just hope they’ll be okay.”
Katie was more focused on the baby’s gender, as they had planned for it to be a surprise. No one said anything as they placed him on her chest, and it felt like a replay of Emilio’s birth. “When your children have hearing issues, there’s so much you have to look out for.” They spent a week in the NICU with Adrian while Emilio stayed with Katie’s mother.
Adrian’s Early Intervention was delayed because he spent time at Strong Memorial Hospital in Rochester for Pulmonary Stenosis. His cardiologist explained that one half of his heart was working harder than the other, resulting in less oxygenated blood. He needed a balloon procedure, which would open his valves. The only place to perform the surgery was in Rochester.
The family stayed at the RMH Ronald McDonald House for two weeks. It was intense and exhausting, but they knew they had to do it.
After the procedure, the doctors tried oxygen therapy and other treatments, but Adrian needed to be sent home with an oxygen tank and monitor. To everyone’s surprise, Adrian somehow exintibated himself as well —a feat the doctor said they had never seen before.
They saw a geneticist in mid-September. Their doctor was eager to see if there’s a connection between Adrian’s and Emilio’s conditions, but more research needs to be done.
“It’s strengthened us,” Angel says, and Katie agrees. “We’re a team. He was always there for every one of my OBGYN appointments, we go grocery shopping together, even if it’s hectic, it’s time we can spend together.”
Angel says she’s a warrior, Katie’s always been a fighter never afraid – “That’s what I love about her. Though hard times, people’s true colors come out. We pushed fear to the side and kept going.” They’ve delt with the experience and they always try to be there and support each other through it.
“Some days are harder than others”, Katie says, “When people ask, ‘How are you doing?” that’s such a loaded question, but “We take it day by day.”
When your child has a disability, your world completely changes. It takes time and patience, but the rewards are tremendous. With solid support comes progress, and in the end that’s what matters for your child to thrive. Katie and Angel are making the most of their life and continue to find ways to give each other strength.
The community of professionals at BHSC strive to enrich the lives of every patient, student, and family we serve. Join us as we explore the Gonzalez-Jones journey, seeing the world through their eyes as they raise two children with special needs. Perhaps their story will resonate with your own. Advocating for a child with an uncommon condition isn’t always easy, and the path isn’t always straightforward, but in the end, it’s worth it to see what a child can achieve when given the opportunity.
