Sean's Mom: He's Been Through So Much

June 01, 2016

Born with a congenital heart anomaly that would ultimately require a series of three open-heart surgeries to correct, Sean Bransfield spent his first four months of life at Ann & Robert H. Lurie Children’s Hospital of Chicago. Then, before his final surgery, his parents learned that Sean had hearing loss and would also need to undergo cochlear implantation surgery.

“My initial reaction was disbelief,” says his mom, Jennifer. "I thought, 'Sean has been through so much, and was doing so well.’”

Jennifer was 20 weeks pregnant when a routine ultrasound indicated that the right side of Sean’s heart was not forming properly and that he had only one functioning ventricle — a condition known as a single ventricle defect.

Jennifer and her husband, Tom, met with surgeon Carl Backer, MD, Head of Lurie Children’s Division of Cardiovascular-Thoracic Surgery, to discuss Sean’s treatment plan. Dr. Backer explained that their baby would eventually need a Fontan procedure. This would require a series of three operations spaced out over several years.

In a normal heart, the right ventricle pumps blood to the lungs, and the left ventricle pumps blood to the body. In a single ventricle heart, there is only one ventricle to do the job of pumping blood. Dr. Backer and his team would ultimately reroute blood flow directly to Sean’s lungs, compensating for his missing right ventricle. 

“Dr. Backer had a quiet confidence that made us feel extremely comfortable, and his entire team is amazing,” says Jennifer. “He drew us a diagram of Sean’s heart and described how the Fontan procedure would be phased and what to expect.”

Sean’s parents also spoke with the coordinator of the hospital’s The Chicago Institute for Fetal Health, which provides pre-birth counseling for pregnant women carrying babies with medical problems.

Just five days after birth, Sean underwent his first surgery. What is typically a six-week recovery process turned into a four-month stay in the hospital’s Regenstein Cardiac Care Unit, after Sean experienced several complications.

Jennifer, who took turns with Tom staying with Sean, praises Lurie Children’s Family Services programs like music therapy, which comforted Sean, and the Family Life Center, which provided a place for Sean’s three siblings to play while visiting their brother in the hospital. Family Services is largely supported by philanthropy.

At six months of age, Sean underwent his second surgery with Dr. Backer, and was home only two weeks later.

“After the second surgery, we focused on his gaining weight and receiving physical, occupational, developmental, speech and nutrition therapy so he would reach his developmental milestones,” says Jennifer.

When Sean was 2, his speech therapist suggested that Sean undergo a hearing test with specialists in Lurie Children’s Audiology Department. The results were a shock to his parents: Sean had severe to profound hearing loss in both ears, and would ultimately need cochlear implantation surgery in one ear and a hearing aid in the other.

A cochlear implant is a small, complex electronic device that can help to provide a sense of sound to a person who is profoundly deaf or severely hard-of-hearing. Lurie Children’s Cochlear Implant Program is led by medical director Nancy M. Young, MD, who has performed more than 1,400 implant surgeries since founding the program in 1991.

“Almost immediately after his cochlear implant, Sean’s speech capacity began to increase astronomically,” says Jennifer.

Just after he turned 4, Sean had his final heart surgery, the actual Fontan procedure. Today, he’s an active boy who loves to play basketball and ride his scooter, and has follow-ups every few months at Lurie Children's.

"Sean is a really remarkable kid, which is amazing given what he’s gone through,” says Jennifer. “For so long we were focused solely on his survival. Now, thanks to Lurie Children’s, Sean is able to run, laugh and play as if he never had to overcome so many serious medical conditions.”

This article originally appeared in the June 2016 issue of Heroes Update.