When your baby has a brain tumor

When Krystal was 30 weeks pregnant with her first child, she received shocking news. In an ultrasound, it appeared her baby, Noah, had suffered a massive stroke in utero.

When Krystal was 30 weeks pregnant with her first child, she received shocking news. In an ultrasound, it appeared her baby, Noah, had suffered a massive stroke in utero.

“The doctors back home told us his chances of survival were very slim to none, and if he did survive, he would have severe handicaps,” Krystal says. She and her husband began preparing, as much as possible, for the unknown challenges ahead.

The day of Noah’s delivery came. “They just kept telling us we needed to pray he came out pink and screaming,” remembers Krystal.

Not only was Noah born rosy and bawling, he had no apparent disabilities. But his first MRI revealed what had looked like a stroke was in fact a tumor the size of a baseball. It was only because newborns have unfused, flexible skulls that the swelling hadn’t killed him.

A new kind of challenge

At 11 days old, Noah underwent a 12-hour surgery in the local hospital, during which most of the tumor was removed from his brain. It appeared to be a glioblastoma, but Noah’s doctors hesitated to declare such an unlikely diagnosis.

“Noah’s doctor said it’s something he had never seen and most physicians would never see in their career. To be born with a brain tumor, let alone a cancerous one,” says Krystal.

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Where to turn, when your baby has a disease most doctors have never seen?

The doctor referred Noah’s family to St. Jude. St. Jude is where doctors often send their toughest cases because we have the world’s best survival rates for childhood cancers like brain tumors. Quickly, Krystal was talking to someone from the brain tumor program at St. Jude.

“I couldn’t believe how kind and how understanding she was — just offering so much information," says Krystal. "She took as much time as I needed to talk to her, and just made me almost excited to come here. Like, this was going to be a positive place, and even if we did get the diagnosis we thought we would, it was going to be okay.”

At St. Jude, doctors confirmed Noah suffered from glioblastoma and initiated treatment. After two rounds of chemotherapy, the remaining tumor had shriveled to just the size of a marble. It was removed completely in a second surgery, followed by more chemotherapy.

Then recently, a scan revealed startling news. Two more tumors were growing in Noah’s brain, neither larger than a centimeter. He underwent another surgery — his third — two days before Christmas. Both tumors were successfully removed.

A recurrence like this is scary, but Noah’s mother remains positive. And Noah remains happy. He has lately discovered his voice and loves to makes sounds, smiling and basking in the attention he draws.

Having an infant with cancer

“He’s at such a crucial point with growth and development,” says Krystal. “The nutritionist, the doctors, the pharmacists — I can’t believe how much they have at their disposal to make sure he does not fall behind. Physical therapy, occupational therapy, speech therapy."

Krystal is thankful that so far, Noah shows no signs that treatment has slowed down his development. "We’re still not out of the woods for developmental issues — but as of right now, he’s hit all of his milestones for his age.”

Sometimes Krystal yearns for the guidance of more experienced moms, of the kind other first-time mothers have access to. “I can’t call my mom or my friends and say, ‘He’s doing this, is this normal?’ Because they can’t tell me. They’re not used to having babies that get chemo plus all these other medications to try to keep him from being too sick.”

Instead, Krystal has come to rely on St. Jude staff for comfort. “They almost talk to me like a family member,” Krystal says. “They always reassure me that, anytime I bring something to their attention, it’s a good thing. We need to know so we can watch things."

There is additional comfort in the knowledge that this level of care is provided with no bill attached. Families never receive a bill from St. Jude for treatment, travel, housing and food — because all a family should worry about is helping their child live.

Krystal is already thinking about what this means for 6-month-old Noah’s future. “The weight that was lifted … I can’t even describe how wonderful it is and what a blessing it’s been for us.”

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