“You almost couldn’t see a baby, there were so many tubes and wires; and he was very, very swollen, you couldn’t recognize him,” recalls Nancy AuClair, mother of quadruplet boys. She is describing the scene of the youngest in the set, Connor, in the pediatric intensive care unit struggling to survive following surgery to remove a 12 cm tumor from his liver. He was barely nine months old. The scene worsens as Nancy tells of how Connor ‘coded’, or stopped breathing, several times post-surgery. “At one point, I told my husband that I’ve given him (Connor) permission to go; that it just was not fair to put him through it,” she recalls. But her husband, Chris, reminded her of something that she knew very well from experience – Connor was a fighter and had been from day one.
Born premature at 29 weeks and weighing little more than a pound, Connor began his life playing defense. His first 17 weeks were spent in a neonatal intensive care unit (NICU) battling back all of the typical medical complications that come along with a premature birth; later, having failed the newborn hearing test, Connor was diagnosed with auditory neuropathy – a hearing disorder in which sound enters the inner ear normally, but the transmission of signals from the inner ear to the brain is impaired. It would be the beginning of a long medical journey for Connor.
Though Chris was stationed at Ft. Irwin in California at the time of the boys’ birth, Nancy had moved home to Atlanta during her pregnancy to ensure she could receive the quality of medical care required. And she and the boys remained with her family in Atlanta for nearly eight months following delivery, so that Connor could receive care for his hearing loss. Once he was cleared to go back to Ft. Irwin, Nancy brought her boys home and settled into a complicated, yet contented, new life as a mother of quadruplets. But the relative calm would be short-lived. Not long after their return, as Nancy readied Connor for a routine ultrasound to monitor reflux in his kidneys, she noticed a lump in his abdomen. The next thing she knew, he was in an ambulance bound for the nearest major medical facility in Loma Linda, CA – about two and a half hours from Ft. Irwin.
Connor was diagnosed with hepatoblastoma, a rare form of liver cancer and immediately underwent highly invasive surgery to remove the tumor and his gall bladder, and to resection his liver. “I was angry. Connor and I spent our life with doctors and I felt like if this mass is big enough for me to feel it, why has no one caught this before,” says Nancy. At first, CT scans and the quick-read pathology report from the operating room indicated that the tumor was contained, a sign that chemotherapy would not be needed; so Connor was sent to recover in the pediatric intensive care unit where he would spend the next forty days. But the extensive pathology came back and contradicted the earlier reports, so Connor’s doctors prescribed four rounds of chemotherapy and released him to the oncology intensive care unit. He would receive only one round before the AuClairs learned that they were being re-stationed. “Connor and I arrived in Kansas before anyone else and went from the airport almost straight to the hospital because he had to start chemotherapy right away,” recalls Nancy. Throughout it all, Connor was not hearing or communicating and was limited in the services that he could receive to the occasional visit from a speech therapist, and some occupational and physical therapy to intervene in the loss of muscle control that he’d begun to experience.
When his chemotherapy concluded and Connor grew strong enough, the focus shifted back to addressing his communication needs. He had been fitted for hearing aids before his cancer diagnosis but, as Nancy recounts, they did nothing for Connor. The family also tried signing with him but, unlike his brothers, Connor did not take to signing and was becoming frustrated. With more conventional options exhausted, the AuClairs began to research cochlear implants (CI) – a surgically implanted electronic device that can help to provide a sense of sound to a person who is profoundly deaf or severely hard-of-hearing.
Connor was approved for his first implant, which was not an easy process in itself. “You have to meet certain criteria within how ‘deaf’ you are – severe to profound, you have to do a hearing aid trial, you have to be medically cleared and cleared by an audiologist, and you have to agree that this is a life commitment until the child is old enough and ready to take control of his own services and therapies,” Nancy explains. Additionally, Nancy and Chris had to commit to follow the Auditory/Oral (AO) approach to therapy which teaches infants and young children to use hearing and speech to develop spoken language for communication and learning. Signs are not used other than natural gestures in typical conversation. But perhaps, as parents, what gave them greatest pause was that they had to accept the fact that, if there is even a small chance the child may have some residual hearing and that their nerve pathways could regenerate – which is possible with a diagnosis of AN – they were taking away Connor’s ability to ever hear naturally. “It’s a huge weight, and some kids don’t bond to their implants, some kids don’t like it. It’s all or nothing, there is no in-between with it,” says Nancy. But knowing how much Connor had already suffered and that, at little more than a year old, he could not communicate at all, Nancy and Chris did not struggle very long with the decision. When they received permission from their insurance company to proceed, they began to prepare for Connor’s first implant surgery. Then, the Army called again – this time the AuClairs would be moving to Savannah. That same week, they found out that Connor’s cancer had metastasized to his left lung, and for the second time in his young life, the need to address Connor’s hearing loss would take a back seat to the need to save his life.
“So we just looked at everything. Thankfully, my family is in Atlanta, and my best friend in the world lives right outside of Jacksonville, and our oncologist in Kansas had a very close college friend that was an oncologist at Nemours Children’s Clinic in Jacksonville,” says Nancy. As before, Nancy and Connor left ahead of the others to begin treatment. Connor underwent another surgery to remove the tumor in his lung and, this time, was prescribed six rounds of chemotherapy. Connor made it through his sixth round of chemotherapy – or his tenth, for those keeping score – and soon after, Nancy and Chris heard utterance of a most beautiful word: remission. Connor is now nearly three years post-chemotherapy.
In June of 2009 Connor received his right-side cochlear implant. Nancy describes the scene as they activated his implant, or ‘ear’ as his implants would come to be called, and Connor heard sound for the first time. She and Chris had been warned that he would most likely cry because hearing sound would be disorienting to him. It wasn’t the first time that doctors had underestimated Connor. A fan of all things transportation-related, Connor’s first computer-generated sound was an appropriate one. “He started looking around and he signed the word ‘helicopter’. He was looking under the table and all over for this helicopter,” Nancy says. And the first natural sound that Connor would hear would appropriately be that of his mother’s voice; better late than never. “It was amazing,” beams Nancy. As it turned out, Connor did not cry at all that day; the same could not be said for the adults in the room.
His implant program required that Connor receive AO therapy, so when Nancy and Chris learned about Savannah Speech & Hearing Center’s (SSH) commitment to deaf children and the AO approach, Connor started working with one of their speech therapists and enrolled in SSH’s Sound Start program – a school for the deaf and hard of hearing. “He started going to Sound Start a couple of days a week,” says Nancy. It would be the first experience that Connor, or his family, had with other deaf children. “It killed me the first day that I came to school and was watching all of these kids with their implants and listening to their speech…I cried because I thought of how much he had set ahead for him and these kids were working so hard,” she recalls. But like every other challenge he’d faced in his life, Connor met it head on and prevailed. He received his left-side implant soon after enrolling in Sound Start, and just two years from the time he first heard sound, Connor went from totally non-communicative to graduating from Sound Start and being enrolled in a regular pre-Kindergarten classroom, only one year behind his brothers. “His speech goals now are targeted phonics, he’s working on the “F” sound,” Nancy says proudly.
If you ask her how they managed to cope with it all, Nancy will tell you about people like her mother, who “does not fly,” but who would jump on an airplane within hours of a phone call; or her best friend whom Nancy had not seen in five years, but who, without hesitation, sterilized her home and welcomed Connor and Nancy as permanent guests while he underwent more grueling rounds of chemotherapy. “You have to learn to rely on people and you have to open your heart and your mind to let people in,” she says. And if you ask Nancy how she thinks that Connor was able to cope with it all, her answer might surprise you. “On one hand, I think Connor’s hearing loss was God’s gift to him; because I don’t know how Connor would’ve gotten through everything he had to go through, having to hear. Connor had this ability to go to another place, just close his eyes. I can’t tell you how many times he feel asleep when somebody was poking him, or fell asleep when he was getting ready to go in for a bone scan. So I honestly believe that God gave it to him so that he could survive it,” she says. The other gift that God gave Connor is his family. His three brothers – who learned early that people are different and some people have challenges – are Connor’s coaches and caretakers. “They are very helpful to him; there are two sets of identical twins and Joshua is Connor’s twin and Joshua will say, ‘Picture, Connor, what’s that? Ok, good job Connor.’ Or, Connor does not like storms – so immediately when thunder starts, Ethan will say ‘Mom, it’s storming, can I go get Connor’s ears?’ Because Connor will immediately say ‘ears off,’ says Nancy.
In barely five years, Connor has overcome more than most people will in an entire lifetime, but to look at him today one would never guess to what extent. Nancy is quick to credit Savannah Speech & Hearing and the Sound Start program for much of the progress. Her son Brayden, who is Ethan’s twin, also has a hearing loss, and receives therapy services from SSH. “They go way beyond the patient-client relationship, they look at the whole family, the whole picture and what we need to do to make this child successful and to empower the family to be successful. And they’re really a good bunch of people, they are like family,” says Nancy. Nancy, too, is grateful that United Way helps to make it possible by supporting programs at SSH. “It’s a gift that you guys are giving.”
The United Way of the Coastal Empire featured story about Sound Start graduate, Connor Auclair, October 2011.