Help us care for more children like Matthew
Lisa Williams remembers receiving the devastating news: There was a problem with her unborn son's heart and he would need surgery in order for it to function long-term. At just 3 months old, Matthew had life-saving surgery at Cincinnati Children's.
Matthew's doctors discovered a serious problem with his heart before he and his twin, Michael, were born.
While Michael’s heart was normal, Matthew had a complex heart condition called double inlet single ventricle, meaning that one of the two ventricles of his heart was underdeveloped and would not function properly long term. Additionally, his aorta and pulmonary artery were misplaced, and his heart was positioned incorrectly.
“Before Matt was born we just thought we would be having twins, and were excited about that fact,” says Lisa Williams, Matthew’s mom. “When we learned of his heart issues it was devastating, not knowing what to expect.”
“Matthew’s heart was so complicated it was hard for us to understand, but his doctors sat with us as long as we needed them to and talked with us,” Lisa says.
One of those doctors was Timothy Knilans, MD, director of Clinical Cardiac Electrophysiology and Pacing at the Cincinnati Children’s Heart Institute. Knilans first saw Matthew in the Cardiac Intensive Care Unit (CICU) shortly after he was born, while the baby’s mother and twin were still at the birth hospital. The CICU is a central component of the Cincinnati Children's Heart Institute, which is staffed by a highly skilled team of experts in pediatric cardiology that is well equipped to handle a specialized and complex case like Matthew’s.
Although most children with a heart defect like Matthew’s need surgery immediately after birth, it was determined that Matthew could wait until he was a little older and stronger.
“Matthew was fortunate that when he was born he had a reasonable balance of blood flow to the body and to the lungs, so he was able to do well for several months prior to having any surgical intervention,” Knilans says.
Matthew’s first surgery
Matthew was 3 months old when he underwent his first surgery, which combined and restructured some of his arteries and rerouted some of the blood flow to his heart. The surgery was a success, and Matthew was able to go home to his family.
Matthew’s doctors continued to monitor his condition for the next couple of years. While the first surgery helped with Matthew’s blood flow, his heart was still not working as efficiently as it should. He couldn’t keep up with his twin and older brother, Jimmy.
“I remember when I was little he couldn’t do anything,” says Jimmy. “He couldn’t walk. He’d scoot around wherever he’d go.”
Because the blood going to Matthew’s body did not carry a normal amount of oxygen, his skin began to discolor.
“He’d get blue,” Lisa says. “As he got older, he’d get bluer. His lips got very blue. You’d be out and people would say, ‘Did he just eat a blue sucker?’ He was that blue. So we knew time was coming for the next surgery.”
That surgery came when Matthew was 3 years old. In February 2002, he underwent an operation to channel blood from the lower part of his body to his lungs. Doctors also put a hole in Matthew’s heart to allow for blood to bypass his lungs in the time immediately after the surgery.
“People many times ask, ‘Why are all of these procedures staged? Why can't you do everything all at once and get it over with?” says Knilans. “If you were to do everything at once at a young age the body wouldn’t tolerate it. The blood would back up in the veins and it wouldn’t go through the lungs and body properly.”
The surgery was a success, but before Matthew could go home, his doctors discovered a problem with the part of Matthew’s heart that initiates the heart’s rhythm.
“We went back and put in a permanent pacemaker, something completely implanted under his skin that would help initiate his heart’s rhythm and keep it in a regular synchronized rhythm to help improve the efficiency of his heart,” says Knilans.
Although the operation was successful, Matthew was not recovering afterwards as he had with the other surgeries. He wasn’t walking or eating, and he had to have a feeding tube put in.
“He was at the age where he would recognize what was going on. They’d have to wheel him out for X-rays and he couldn’t take it anymore. He’d cry and cry and wanted out of there,” Lisa remembers.
“During that surgery Matthew became a different child,” Lisa says. “He had gone through so much and it really took a toll on him. He was not getting any better in the hospital and would not let anyone look at him or even touch him except Dr. Knilans.”
Knilans remembers that difficult period for Matthew and his family, and warmly recalls the special bond that formed between him and his young patient.
“He was in the hospital for a long time after his third surgery and needed a lot of interventions,” says Knilans. “I had bonded with Matt from the many outpatient visits that he had required before that surgery. I stopped in to see him daily during his admission to examine him and talk with his parents about the plan. For quite a while after that hospitalization, he wouldn’t cooperate with any tests if I wasn’t there. For whatever reason, he trusted me and would do whatever I requested.
“Since then, he has become a lot more outgoing,” Knilans added.
After 18 days in the hospital, Knilans decided Matthew would be better off recuperating at home, which now included new baby sister, Paige. It turned out to be just what Matthew needed, and after a few weeks, he was on the mend.
When Matthew was 7, Matthew had another surgery to implant a device called an Amplatzer. The device was inserted with a catheter to close the hole in Matthew’s heart which was placed at his prior surgery, averting the need for another open surgical procedure. The hole had to be closed because if left open, blue blood would go through the hole and lower Matthew’s oxygen saturation. Additionally, a blood clot might go through the hole and cause a stroke. Matthew came through the operation with flying colors.
A healthy future for Matthew
Today, Matthew is living the life of an active, fun-loving kid. The towheaded Cincinnati Bearcats fan loves sports, playing video games and jumping on the family’s trampoline with Michael and Paige.
“Matthew amazes us with his energy level,” Lisa says. “Since they put in the Amplatzer, he can actually play longer and breathe better. He doesn’t have to take breaks as often and we usually have to tell him to stop.”
Matthew still sees Knilans every six months to check his heart and pacemaker. Sometimes he has an EKG and echocardiogram, and every three months he has his pacemaker checked over the phone.
“Matt is doing very well now. He is essentially asymptomatic,” Knilans says. “The only real restriction that I have for Matt is recommending against contact sports, such as football and wrestling, related to potential risk to the pacemaker.”
Matthew’s parents are thankful for the treatment their son has received from the many doctors and health care professionals at Cincinnati Children’s. They especially appreciate Knilans, who has made special trips to the Cincinnati Children’s outpatient facility in Mason, near the family’s home, so that Matthew wouldn’t have to come to the main hospital.
“Every doctor Matthew has seen has been wonderful, but I want to mention how awesome Dr. Knilans has been through every bit of Matthew’s life,” Lisa says. “He has always been so kind and very interested in everything I tell him regarding Matt’s health. We have been so lucky to have Cincinnati Children’s so close to us. I don’t know what we would do without them.”
While Matthew doesn’t remember much from his time in the hospital, he does remember the kindness of the doctors and nurses that treated him.
“They were really nice to me and made me feel good,” he says.
Matthew’s parents will never forget how the world-class team of heart specialists at Cincinnati Children’s saved their son’s life, and they are grateful for the support and expert care he continues to receive.
“Cincinnati Children’s is an unbelievable place,” Lisa says. “Everyone makes you feel so comfortable, and they are always willing to help in any way they can. I know any time I have a question about Matthew and his health I can call Dr. Knilans day or night and he will respond to me. As Matthew has grown we have had many different challenges, and Dr. Knilans has always been there to answer all of them. He goes above and beyond for us and we cannot thank him and Cincinnati Children’s enough.”
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