Baby Stellan's prognosis was grim, but he has survived six months as people around the world follow the saga via the Internet.
The international phenom needs a nap.
He has just sucked down his bottle and, cradled in his mother's arms, starts to fuss. She coos soothingly, then offers him his orange pacifier. He's out. Two of his older siblings play with a sitter in the yard. Another is at preschool. It's the most ordinary scene in the world, which is why it is nothing short of extraordinary.
"He'll continue on his heart medication and monitor for now," Jennifer McKinney, 31, says of her cherubic and barefoot 6-month-old son, dressed in a tiny blue T-shirt and brown pants, whose plight has attracted an international following via the Internet. "But he'll probably have to have a pacemaker at 4."
At four. Two words this mother never imagined she'd utter.
But seated in the sunny, contemporary living room of her home on an acre-and-a-half in Mound, a vibrant bouquet of her favorite Gerbera daisies gracing the kitchen table, McKinney lives in a world she didn't imagine just one year ago. It's a world of one mother's fierce determination to save her son, and deepening faith to buoy her should the worst still happen.
The baby boy's name is Stellan, deriving from the old Norse words for "calm" or "peaceful." It was given to him by Jennifer and her husband, Israel, after a routine ultrasound at 20 weeks revealed a typically fatal heart ailment called supraventricular tachycardia, or SVT. His heart beat too fast. His grief-stricken parents wanted to name him to remember him.
Overnight, McKinney's daily musings on her mommy blog, mycharmingkids.net, shifted from the goofy antics of three closely spaced children, to the frequently raw emotions of a mother facing fear, confusion, exhaustion and the reality that her marriage was suddenly hanging by a thread.
July 27, 2008: I don't want to write a post. I don't want to eat. I don't want to sleep. I don't want to be awake. I don't want this to be happening to my baby. I don't want to be cute or witty or funny. I don't want to have visitors. I don't want to be alone...
Perhaps due to her blog's captivating presentation (McKinney is a professional photographer), or the dramatic nature of the unfolding story, or perhaps due to our viral world where good news travels at lightning speed and bad news travels faster, McKinney quickly learned she was far from alone. Within days, people in China and Panama, Ireland and Africa, were praying for Stellan. Not just praying, but writing his name -- in the sands of Senegal, in snow and pancake batter and with Legos. Soldiers in Iraq, politicians, professional athletes, schoolchildren; thousand of them, many wearing orange, her favorite color.
McKinney is humbled beyond words. She knows that other families face crueler realities. But as a woman of faith, she understands that, as much as she needs to share the seeming miracle of Stellan, the world is equally hungry to hear it.
"They want something, too," she said of the followers of her blog, which now gets more than 100,000 hits a day. "Sometimes, I need a break. But as soon as I give myself a day away, I want to come back."
• • •
McKinney, a natural beauty with curly brown hair and sea-blue eyes, grew up in La Crosse, Wis. She was bookish, a swimmer, with lots of friends. She didn't date in high school, but she had a mad crush on one boy: Israel, whom she has known her whole life. They reconnected after she graduated from Northwestern College in Roseville. They married in 2003 at her parents' house in La Crosse and discovered they were expecting five months later, while Jennifer was teaching art at Excelsior Elementary School. Nineteen months after first son, Kieran, arrived, son Cullen was born; 14 months after that came daughter Maisie. When Maisie was 4 months old, Jennifer had an oh-no moment. She went into a craft store to buy fabric to make three library bags, stepped into the bathroom to take a pregnancy test, came out and bought enough fabric for a fourth.
"I was actually scared to tell Israel," she says with a big smile. His reaction? Let's grow these four up and have four more.
Still, the pressures of raising three children under 3 were stressing their young marriage. Then, at her 20-week ultrasound, the doctor detected "a little irregularity" in the fetal heartbeat. At 22 weeks, it beat so fast the technician couldn't get a reading.
July 8, 2008: "... a crushing blow of unexpected news. MckMuffin's tiny heart is not as it should be. Beating irregularly, at times not beating at all, twitching, double beating and then missing a beat."
Jennifer was whisked to Abbott Northwestern Hospital in Minneapolis, where she was placed on heart drugs and monitored for three weeks. Israel, who works as a general contractor, flexed his hours and remained on the home front with the kids. Jennifer's parents, her sister, Hilary Farm, and mothers from her Mothers of Preschool Students (MOPS) group pitched in with kid-care and meals. Jennifer, trying to imagine "how women can lose their babies and survive," blogged as therapy.
"We were already in a dark season of our marriage," she said. "We were pushing each other away. Men like to be able to fix things; their broken three-wheelers, their sick baby, their wounded marriage. ... And I liked to think I could control things; my organized kitchen cupboards, our children's eating habits, my husband's behavior, by keeping such a tight grip on them that there was no way to go but my way."
Israel was struggling, too. "I don't want my son to die," he reflected last week. "The way I reconcile that is, what's beyond my control is beyond my control. It can be a challenge if I dwell on the things I can't fix or change."
Jennifer was getting ultrasounds around the clock; doctors were trying experimental medications. At 24 weeks, she and Israel were visited by a bereavement photographer. Then, at 25 weeks, Stellan's heart rate mysteriously slowed. "The rest of my pregnancy was watching him slowly get better and better and better," she said.
Stellan was born by Caesarean section on Oct. 29, 2008, three weeks early, weighing 6 pounds, 11 ounces. "His first EKG was perfect," McKinney says. "There was not a darn thing wrong with him. He went home with me after three days. End of story.
"Or so we thought."
• • •
Through therapy, their marriage was healing. Stellan was healing, too. Then, in March of this year, he had a cold and was struggling to breathe. His heart began racing again. "This is the sickest joke," McKinney said. They rushed via ambulance to Children's Hospital of Minneapolis, where mother and baby remained for another month, with little hope. "Everything they tried failed," she said.
In April, as a last-ditch effort, McKinney and Stellan were airlifted to the renowned Children's Hospital Boston for a surgical ablation, or burning, to destroy an additional pathway to Stellan's heart. The extraordinarily delicate surgery, in which doctors must avoid nicking a coronary artery, was partially successful. That means the pathway was wounded, but not destroyed. That buys Stellan time. Another ablation is likely, McKinney says, ideally at 4, if he can remain healthy until then. A pacemaker is also a possibility.
McKinney, "a recovering Supermom," describes life now as a "new normal." Stellan sleeps with a heart monitor and takes a medication that slows his heart rate. She takes his pulse and uses a stethoscope. A home care nurse visits twice weekly. Stellan gets EKGs every two weeks. McKinney knows that some things, often the biggest things, remain out of her control.
Yet on this Mother's Day, she's the first to tell you that she wants nothing more than what she has. "The miracle of Stellan isn't that he was born alive and made it through the surgery," she said. "The miracle is that, because of my baby, people are praying. He's bringing out the pure good in people.
"And my family is still together praising God."
Gail Rosenblum • 612-673-7350