This is the amazing story of a baby born with his brain partially growing out of his skull. During the pregnancy, doctors feared the worst and suggested an abortion. The two parents staunchly refused. After they found a doctor who had experience with their son’s rare disorder, there was hope. And, their little Dominic made it in the end! Now, he is flourishing!
Little Dominic was born with a very rare disorder called encephalocele, a condition where part of the brain grows outside of the skull. Fearing the worst—possibly death or severe disability after birth—the doctors suggested that the parents abort the child. The couple, who already had 7 other children, and who were devout Christians, refused to terminate the pregnancy, opting instead to put their child’s life in God’s hands.
“That’s my child. It’s that simple. I’m not going to take the life of my child”, said Marie Gundrum, Dominic’s mother.
Despite her faith, Mary was unable to find any hope of saving her son, while researching his condition online. “I couldn’t find any message of hope,” she said. Thankfully, she eventually did find Dr. John Meara, who had some experience with encephalocele. She then she sent him Dominic’s ultrasound to examine.
What Dr. Meara discovered was yet another complication: Dominic also had a Tessier facial cleft: essentially the two sides of his face—starting from his upper lip to this forehead—were separated. A ‘bubble’ growing out from where his nose should have been was believed to be his brain growing out of his skull. Dr. Meara described the combination of the two conditions as: “exquisitely rare”. Under such circumstances, many parents would have aborted the child. However, what Dr. Meara said was profoundly comforting to Mary, and Mark Gundrum: “I want you to know it’s going to be OK,” the doctor said.
Dominic was born in June via Caesarian section at a healthy 8 lb..
“You look at him, you say ‘this is who he is,’ and then you fall in love,” his mother shared.
There was some good news however: the ‘bubble’ growing out of the boy’s nose was not the boy’s brain growing outside his skull after all; in fact it was just filled with fluid.
Both the parents became even more hopeful when the doctors started planning surgery to repair the facial cleft: to remove the encephalocele, and bringing the two sides of his face together—essentially closing the boy’s skull. Dr. Meara planned a joint surgical procedure with neurosurgeon, Dr. Mark Proctor. However, the procedure was not without its risks as Dr. Meara soberly understood.
Nevertheless, despite some complications during the surgery, the operation was a success. Dominic spent several weeks in Intensive Care, and went home to Wisconsin one month after surgery. The boy is now doing great.
Despite that half of his brain—the corpus callosum, which connects the left and right sides of the brain together—is missing, and therefore it takes longer for him to develop his walking and talking skills, Dominic is nevertheless a very happy little boy, and thriving!
“The day Dominic was born, a group of friends had a tree planted in our yard in his honor,” said his father Mark. “I remember thinking, 10 years from now, I’m either going to look at that tree and think of the son I lost, or watch him climb its branches. Right now, thanks to so many wonderful people at Boston Children’s and beyond, I’m excited to watch him hanging from that tree as they both grow bigger and stronger.”