In the fall of 2002, when Jill Brown was pregnant with her first child, she saw a TV documentary that focused on children whose faces were marred by tumors. She wasn’t spooked. She thought to herself, “If that’s my child, I’ll be able to handle it.” She was 25, an energetic former college-soccer player with great reserves of patience. A previous pregnancy had ended in a miscarriage, and she was anxious for a better outcome this time. When, on February 16, 2003, she gave birth to a healthy girl weighing seven pounds, thirteen ounces, Jill was overjoyed. The baby was beautiful and feisty. Jill and her husband, Paul, who worked at John Deere Credit in Johnston, Iowa, a suburb of Des Moines, named her Aslynn, a variation on the name of the godly beast in The Lion, the Witch and the Wardrobe. “We could tell she was going to tackle life in her own way,” Jill says.
About a week after bringing Aslynn home, Jill spotted a pale-red patch on one side of the baby’s head. She wondered if it was a rash from cradle cap. At Aslynn’s two-week pediatric checkup, Jill asked the doctor if she should put lotion on the skin. The pediatrician told her it was a birthmark, that it would go away before too long, and that its location was fortunate—soon it would be covered with hair.
A few weeks later, Aslynn’s extended family gathered for her baptism. By this point, the birthmark had turned a deep shade of cranberry, and it was blistered and swollen. The change had been gradual, and Jill, who was with Aslynn virtually around the clock, had barely noticed the difference. She did, however, note the startled reaction of her relatives, and she asked her doctor for a referral to a pediatric dermatologist. “That was when we started down the wrong path,” Jill says.
The dermatologist told the Browns that the birthmark was a hemangioma, a noncancerous tumor composed of a clump of blood vessels run amok. “The doctor said there was nothing to be done about it, and nothing to worry about. He said it should go away by itself by the time Aslynn was 8 or 9, and we’d just have to live with it.” For Jill, who had feared the worst—cancer or brain damage—the diagnosis was reassuring. She trusted the authority of doctors.
At 4 months, however, the hemangioma had spread to Aslynn’s neck and begun to form a thick, softball-sized mass. Jill also noticed swelling in Aslynn’s throat and on her tongue. Scabs appeared on her head, and left scars when they fell off. Aslynn would tug repeatedly at her left ear, which was now bent from the weight of the growth. The skin between the ear and scalp was cracked, and often bled. Jill prevailed on her pediatrician to schedule an MRI, and when it showed normal brain function, Jill was again relieved.
“Aslynn’s physical development had ground to a halt. Her heart had been strained to its limits by the tumor’s demands.”
But the mass continued to grow. “It was hard to even track its progress,” Jill says. “It had no boundaries.” The tumor soon covered the back of Aslynn’s head, and drooped over her upper back. It was pink and purple, its surface sketched with veins. It felt soft to Jill, like a pillow, and she would curl against it as Aslynn slept. Despite the fact that Aslynn had become steadily more disfigured, Jill continued to have faith in what the doctors had told her. She remained enamored of her baby, and was stubbornly blind to her “birthmark.”
Others were not. Aslynn’s appearance elicited a stream of comments from strangers. Jill considered many of the comments innocent, even charming—children asking why Aslynn’s head was so large, or why it had been painted red—but other remarks were wounding. In the public library, a 10-year-old boy circled Aslynn before shouting at Jill, “That’s the most disgusting thing I’ve ever seen. I’m getting out of here before I’m sick.” At Gymboree class, another mother approached Jill in tears and said that Aslynn’s presence had “traumatized” her.
Jill began to worry about the treatment Aslynn would get from children when she was old enough to go to school. She couldn’t believe nothing could be done, so she arranged to see an internationally recognized specialist in pediatric otolaryngology. The specialist was blunt with her. The mass had grown too large to treat with steroids, he said, and was too deep to be repaired by lasers. As for surgery, the doctor dismissed the possibility as too risky. A hemangioma, he explained, was like a sponge, saturated with blood vessels. Cutting into it would likely trigger catastrophic blood loss. Surgery, he concluded, would be “bad medical practice.”
Okay, Jill thought, I’ve exhausted my options. I’ve done testing and seen the best specialists. It’s time to move on. As long as Aslynn is healthy, it doesn’t matter how she looks.
In December, Aslynn’s pediatrician detected a heart murmur. Again, nothing to worry about, Jill was told, but worth a trip to the cardiologist. A battery of tests followed. The results were peculiar. Aslynn’s heart had grown enlarged from pumping out a higher-than-normal volume of blood to “feed” the tumor. But the blood, and its nutrients, were being siphoned off by the mass. As a result, Aslynn’s physical development had ground to a halt—she had gained barely one pound in the previous four months—and her heart had been strained to its limits by the tumor’s demands. The diagnosis: high-output cardiac failure. Aslynn was immediately put on two powerful medications. She would have to remain on them, Jill was told, until the hemangioma went away of its own accord. It could be eight years, ten years, twelve—if Aslynn lived that long.