Having a baby who is born with health issues is exhausting and expensive. And if you find out that your little one has a series of health issues, it can certainly be overwhelming. One mom is sharing her and her son’s story as they’ve navigated the first year of his life with a serious brain malformation.
The baby, who recently celebrated his first birthday, has already had most of the left side of his brain removed and could potentially need more removed in the future. His parents hope they can give their son an amazing life, despite what challenges lie ahead.
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The delivery was harrowing for all involved.
Andalusia Mesa spoke exclusively with People about her 1-year-old son Caper and the first year of his life. After a “normal” pregnancy, things took a turn when she gave birth. Because she went past her due date, she had to be induced, but that didn’t feel out of the ordinary. As she came out of the haze of her delivery, however, she noticed that things felt off.
“Everyone else in the room is freaking out because he was purple since he hadn’t been breathing,” Mesa told the magazine. “And then they whisked him away very quickly.”
Her baby was “born with fluid in his lungs,” according to the mom. “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,” she explained.
The family's lives were about to change.
Mesa noticed that Caper’s eye kept twitching, and she expressed concern that he was having a seizure. Every time she asked, doctors brushed her off. “They kept saying no,” she said.
Additionally, every time she and her husband, Charles, asked doctors for an EEG, they “kept denying” one. Eventually, she and her husband decided to go around the doctors, sending a video directly to the neurologist on call at UCLA Santa Monica. The doctor ordered an EEG when Caper was a week old.
“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,” she explained to People. “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.”
Caper was “likely having one consecutive seizure for this entire first week of life,” she shared.
It was likely that her baby had been having a week-long seizure. After the EEG, he was given an MRI.
During the MRI, doctors discovered the baby had hemimegalencephaly, a brain malformation on the left side. The only way it could have been discovered sooner would have been an MRI in utero.
“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,” Mesa explained. At 4 weeks old, baby Caper underwent surgery to remove the left side of his brain.
Two weeks later, Caper was discharged and allowed to go home. Shortly afterward, the seizures came back. They learned that he would need another surgery to remove more pieces of his brain.
“The first surgery had a 60% chance of giving him seizure freedom, and the second surgery had a 50% chance of giving seizure freedom,” she said. “It did not give him seizure freedom.”
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The whole process has been expensive.
Caring for a baby with so many needs hasn’t been easy for Mesa and her family. She has a full-time job in addition to being a full-time care giver for her son. And all of his care has been costly for the family.
“We have not been provided health insurance from the state, even though his conditions and diagnoses are severe enough that he should have qualified for Medical,” she said, adding that Caper is on her health insurance from work. “Caper’s first surgery was $5 million, and we only had to pay our maximum out of pocket.”
As a result, friends of the Mesa family have set up a GoFundMe account with the hope of raising $100,000 to help with costs related to Caper and his care.
It has been an eye-opening experience for the family.
Mesa admits that “it’s hard to see other kids succeeding when yours feel so far behind.” She shared that Caper still isn’t able to hold his head up. Additionally, the family recently learned that he has cerebral palsy, epilepsy, and a variety of vision problems.
“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 said. “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.”
In the meantime, the family is living the best they can and sharing Caper’s journey on Instagram.
