It's a heartbreaking time for a mother and family. A baby ended up having the left side of his brain removed at just 4 weeks old.
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So why the expensive and life-changing surgery? Rewinding back to November 2023, Andalusia Mesa gave birth to her son Caper. But she noticed that something wasn't right.
"Everyone else in the room is freaking out because he was purple since he hadn't been breathing," she told People. "And then they whisked him away very quickly."
"He was born with fluid in his lungs," she says. "They were worried about there being an infection. He was born not breathing, he was code blue. And so he just started off immediately in the NICU [neonatal intensive care unit]."
Parents Mourn Loss
Andalusia thought that her son was having a seizure when she saw him, noticing his eyes would twitch. However, her doctors said that he wasn't. Still, the parents requested an EEG to measure the electric activity in the newborn's brain when he was just 7 days old.
"We finally got our EEG. They say it's going to be a 24-hour EEG. If nothing happens, then it's most likely not seizures or it's definitely not seizures," Andalusia says. "And within 30 minutes of the EEG being on my son at one week old, doctors started rushing in with intervention medication. He had been seizing consecutively for the first 30 minutes of the EEG."
To her horror, she learned that her newborn had had consecutive seizures for nearly the first week of the baby's life.
"He was likely having one consecutive seizure for this entire first week of life," she shares. "After 30 minutes, seizures cause brain damage. So he was likely getting one week's worth of brain damage already out of the gate. And it's possible that he was having seizures in utero and that's why his movement was so abnormal."
An MRI determined that he had a brain malformation on his left side called a hemimegalencephaly. Although extremely rare, they can be devastating.
"We would never have known because most pregnant women aren't getting MRIs," Andalusia says. "They told us as soon as they gave us the diagnosis that pretty much the only course of treatment would be to get a hemispherectomy, which is a surgery to remove the left side of the brain entirely."
Baby Has Half Of His Brain Removed
At just 4 weeks old, doctors removed the left side of Caper's brain. Two weeks, later, he was allowed to go home. But he ended up having more of his brain removed after having more seizures.
"The first surgery had a 60% chance of giving him seizure freedom, and the second surgery had a 50% chance of giving seizure freedom," Andalusia says. "It did not give him seizure freedom."
Andalusia said they experienced a lot of mixed emotions.
"That was kind of the last option for him, was this surgery, and it wasn't as successful as we'd hoped," she says. "And then you have a lot of regret as a parent allowing your kid to go through another hospitalization and having to start his recovery journey all over."
"He can't hold his head up," she continues. "We see a lot of other kids who have undergone this surgery months later than Caper did, who can hold their head up."
Despite the surgeries, Caper still suffers a few seizures throughout the week. Doctors have diagnosed him with cerebral palsy and epilepsy.
"I think we were in shock at that point," she said. "I had been having no more than two hours of sleep a day for that week, and I was happy to finally have answers and that they finally took us seriously. We were looked at like paranoid first-time parents."
As Caper's prognosis settled in, Andalusia grappled with the fact that her son would never have a normal life.
"You make concessions and you're like, 'Well, I hope he can still have a romantic relationship in the future,' and then you realize maybe he will never be able to have that," she says. "And then you're like, 'Oh my God, I hope he can just communicate with us what he likes,' and he might never be able to do that. You start mourning the life that you wanted for your kid and he'll never have."
