By Polly Keary, Editor
When her infant son had to have heart surgery, he needed a lot of blood.
So do all kids who have serious surgeries for heart complications.
And February was Congenital Heart Defect Awareness month.
So Monroe mom Jessica Lewellen decided to help both spread awareness and support the local blood supply by organizing a blood drive later this month.
And, in hopes that others will become aware of the need for research and greater understanding of childhood heart defects, she talked last week of the terrifying first year of her son’s life, and how other moms can catch potential problems before they become fatal.
The struggle begins
The ultrasound was the first warning.
Pregnant with her third child, Lewellen was told there was something wrong. The doctor was unable to see the baby’s pulmonary artery.
But at a follow-up exam, she was told the baby was fine. And when he was born by cesarean section in May of 2010, a whopping 10 pounds and seven ounces, his size seemed to indicate robust heath.
But the moment he was placed in his mother’s arms, she knew something was wrong.
“He looked blue,” she said. “I was saying, ’Something’s not right.’ And I called the nurse and she said, ‘Oh, he’s fine.’”
But when she poked his foot to test his glucose level, the infant turned very blue. When they quickly tested his oxygen level, it was only 62. The lowest level considered sufficient is 90. And when the nurse listened to his heart, she said she could hear a murmur.
“I was like in a time warp,” said Lewellen, 30. “They told me he had to go to Children’s Hospital and have open heart surgery. They said his arteries were flipped and he had a hole in his heart and there was a narrow part at the bottom of his pulmonary artery.”
From that moment, and for the next year, the struggle to save Conner’s life never stopped.
For Lewellen, who teared up frequently while recounting the story, that day in the hospital felt like a nightmare. She was unable to leave the hospital because of her C-section. But she tried anyway.
“They had to hold me down,” she said. “I was above the entrance of the hospital and I could hear the ambulance start up. And I said, ‘I’m going with my baby.’ The aide held me down. And I plugged my ears and said ‘la la la,’ because I didn’t want to hear him leave. I didn’t know if I would see him again.”
Fighting for life
At Children’s, Connor’s life was touch-and-go.
A shunt put in to keep his oxygen levels failed.
He nearly died of drowning on fluid gathered around his heart and lungs.
Four days after his birth, Lewellen was able to go to Children’s. When she got there, the medical staff who were gathered around Conner’s monitors were shaking their heads.
“The surgeon took us to the Balloon Room, and the chaplain was with us, and you know what that means,” she said. “Some of my friends were there; my family was there. The doctor came out, the first thing he said: ‘If Conner makes it…’ He kept saying ‘if,’ and I kept saying ‘when, not if.’ I ended up lunging at him.”
Conner did pull through surgery. But he was in the hospital for a month.
When he came home, he was placed on a total of nine medications. He had to be fed through a tube running down his nose into his stomach, and when it slipped out, his mom had to put it back in, terrified each time of getting it wrong and sending formula into his lungs.
A week after he got home he was back in the hospital withdrawing from the morphine he’d been on.
He was in and out of the hospital all of July, and in August, he developed a rare arrhythmia that sent his heart rate up and down rapidly. That meant even more time in the hospital.
In January, he finally had open heart surgery, replacing the faulty pulmonary artery with a cow jugular vein. It should have been the end of many of Conner’s health problems.
But he got a staph infection.
“I woke up at 4 a.m. in the hospital and turned on some lights, and he was making a weird noise and his back was arched. He was unconscious and struggling to breath. His oxygen was in the 30s, and his heart rate was 49. He was dying.”
Tears came to her eyes again as she remembered lifting his small body in spite of the many tubes and telling him to hang on, that he’d be alright.
It was a hard promise to keep.
Conner’s organs were failing. He had bleeding on the brain. His liver stopped working. He turned vivid yellow.
He’d entered the hospital Jan. 25, and didn’t leave until April 5.
Turning a corner
Finally, nearly a year after his birth, Conner’s health stabilized.
Doctors had worried about lasting cognitive issues, but fortunately they haven’t manifested.
“He’s a smart little cookie,” said Lewellen.
He was set back in his physical development, not walking until his seventeenth month, but now his weight is in the normal range for his age of three-and-a-half, and his heart is functioning well. He will need further surgeries as he grows, but they will continue to be further apart.
During her family’s ordeal, Lewellen coped in part by finding an online community of the mothers of other children with heart defects.
“Heart moms. We research; we’re like detectives,” she said. “I know a heart mom; she lives in Ohio. She could probably do an open heart surgery on her kitchen table.”
They share the details of their children’s medical issues, but also the other things that come with the serious illness of a child.
Lewellen readily confesses that she spoils Conner a bit.
“I take him for ice cream for lunch sometimes,” she said. “I love all my kids all equally, but the fact is I might have to do a funeral for my son one day. They can’t tell my son what his prognosis is. So I spoil him a little bit, but he’s a good kid. He’s a good boy.”
Another thing the moms do is observe Cognitive Heart Defect Week immediately before Valentine’s Day.
“We are always posting, ‘What are you doing for awareness week?’” said Lewellen. “Last year I painted car windows with facts. This year I decided to take a break, but it was nagging at me. I know another heart mom from Alaska who does blood drives there every year. So I decided to do that.”
The blood drive will be Saturday, March 22, from 10 a.m. to 2 p.m. at the Wagner Performing Arts Center on Main Street in Monroe.
Questions to ask during an ultrasound
When going to your 18-20 week ultrasound, ask these questions:
Are all four chambers of the heart visible?
Are there two upper chambers, each with a valve carrying blood?
Are there also two lower chambers, each with a valve?
Do the aorta and the pulmonary arteries cross?
Is the wall between the two lower chambers intact, without any holes?
Is everything else normal, as well?
Signs of heart problems in infants
Heart rate is too low or too high: Normal is 100 to 160 beats per minute.
Low energy: Does the child fall asleep during feedings? Is she or he sleepy all the time?
Skin tone: Does the child have pale, blue or dusky skin?
Breathing too fast or slow: Normal is 40 to 60 breaths per minute.
Temperature: watch for cold hands and feet.
If your baby has any of these signs, talk to your doctor about your concerns.