Baby Has $5 Million Surgery to Remove Left Side of Brain at Just 4 Weeks Old. Now He's Waiting for the Next One (Exclusive)

After welcoming her son Caper in November 2023, Andalusia Mesa couldn't wait to meet her baby boy and hold him in her arms. But her joy quickly turned to concern when, through the haze of her pain medication, she looked around the room and realized that all the doctors and nurses were panicking.

“Everyone else in the room is freaking out because he was purple since he hadn’t been breathing,” the Los Angeles-based mom recalls to PEOPLE. “And then they whisked him away very quickly.”

Andalusia had a normal pregnancy, only noticing that Caper would move in her stomach at odd times. She had to be induced because her son was past his due date but didn’t think anything of it – and she certainly didn’t expect any medical issues.

“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].”

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From there, things began to get worse. Andalusia recalls seeing Caper’s eye twitch and thinking that she was witnessing a seizure. However, when she asked the doctors if she was correct, they shut her down. “They kept saying no," she says.

They also “kept denying” her and her husband Charles’ requests for an electroencephalogram (EEG) test, which measures electrical activity in the brain, when they noticed Caper’s feet twitching.

Eventually, the worried couple sent a video directly to the neurologist on-call at UCLA Santa Monica, who finally ordered an EEG. Caper was 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.”

“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.”

Once doctors realized something was wrong with Caper, he was given an MRI. That’s when they discovered that he had a brain malformation on his left side called a hemimegalencephaly, or HME. The condition is extremely rare — according to the Children's National Hospital, it only affects a handful of children a year — and the only way to diagnose it in utero is with an MRI.

“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.”

On Dec. 28, 2023, when Caper was 4 weeks old, he had his surgery. In the hour leading up to it, he suffered six seizures.

Two weeks after the surgery, he was discharged from the hospital and allowed to go home. Not long after, the seizures started up again and the family was told that Caper would need a second 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,” Andalusia says. “It did not give him seizure freedom.”

Andalusia describes Caper’s time spent in the hospital after his second surgery as “awful,” saying that they felt like they could see him regressing.

“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.”

Comparing Caper to other kids’ cases has been difficult, as Andalusia admits “it’s hard to see other kids succeeding when yours feel so far behind.”

After his second surgery, Caper had his medication increased. Today, he still suffers a few seizures a week, but usually not more than one a day. Throughout his journey, he has also been given a diagnosis of cerebral palsy and epilepsy.

“I think we were in shock at that point,” she shares of learning that Caper had cerebral palsy. “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 she came to terms with Caper’s prognosis, Andalusia says she started “making negotiations” in her mind.

“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.”

As of now, Caper sees at least seven different specialists multiple times a year at the hospital. His next surgery option is for seizure reduction and will involve an implant that doctors will put in his brain to stimulate his brain activity, as a result of having surgeries. But he won’t be a candidate for that until he’s older.

“Currently, he is on five, trying-to-be-six, different anti-epileptic medications and he’s still having seizures,” Andalusia says. “That’s a lot. Most people find seizure freedom on one or two medications, and Caper does have a very severe case.”

With Christmas only a few weeks away, Andalusia and her husband are excited to celebrate Caper’s first “official” holiday at home, since he was in the hospital during Christmas last year.

“We left the Christmas tree up year round, cause we think he really likes the lights on the tree,” Andalusia says. “We haven’t really planned anything really, but we’ve got a lot of family locally that’ll probably come together and just do Christmas traditions.”

Although she’s been able to lean on family members for support throughout this time, Andalusia says that because Caper needs 24/7 monitoring and that his care will change as he hits new milestones, it’s hard to leave him with anybody else.

“Even if we train somebody on how to take care of him, as things develop with him, as he starts eating solid foods and isn’t just eating through the bottle, the people that we trust to take care of him have to be re-trained on how to take care of him,” she says. “And it’s hard to trust people to care for him as closely as we do.”

Andalusia, who works as an assistant project manager for a photography studio, is still full-time at her job while also caring for Caper. It’s been hectic trying to balance both of those responsibilities, but she says she can’t afford to lose her job.

“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,” Andalusia says, adding that Caper is on her health insurance from her company. “Caper’s first surgery was $5 million, and we only had to pay our maximum out of pocket.”

As she navigates an impossible situation of taking care of her son while also trying to be present at work, Andalusia says it’s hard sometimes not to blame herself. “There’s only so much of me to go around,” she says.

For Andalusia, the one bright spot has been connecting with other families and kids who can relate to what Caper has gone through. Andalusia runs her son’s social media accounts and has been able to find a community of support through Facebook and Instagram.

The family was also able to attend Epilepsy Awareness Day at Disneyland just before Thanksgiving this year, where they met another family with a 13-year-old daughter who has epilepsy.

“You see somebody who’s got a different diagnosis than Caper, but she seems to be doing so well. And here she is at Disneyland!” Andalusia says. “That’s maybe where we’ll be in 12 or 13 years – back at Disneyland, living life and making friends and taking time off work.”

Andalusia and Charles’ friends and family have set up a GoFundMe for them and are hoping to raise $100,000 for them. There’s still a long road ahead for Caper — at the time of their PEOPLE interview, the family had just been told that he’s likely blind.

By sharing her family’s story, Andalusia hopes others are encouraged to advocate for themselves in medical settings.

“Don’t ask your doctors for something, tell your doctors you want something and trust your gut,” Andalusia says. “Unfortunately, Caper’s long-term outcome has been severely affected by people looking at us like paranoid parents. I stay very vocal and very open about what we’re going through in hopes that somebody overhears me on the Internet or in person and can chime in with, ‘Oh my gosh, we’re dealing with the same thing,’ or, ‘We’ve been there.’”

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