Child Has $5 Million Surgical procedure to Take away Left Aspect of Mind at 4 Weeks Outdated (Unique)

After welcoming her son Caper in November 2023, Andalusia Mesa could not wait to satisfy her child boy and maintain him in her arms. However her pleasure rapidly turned to concern when, by the haze of her ache treatment, she seemed across the room and realized that every one the medical doctors and nurses had been panicking. 

“Everybody else within the room is freaking out as a result of he was purple since he hadn’t been respiratory,” the Los Angeles-based mother recollects to PEOPLE. “After which they whisked him away in a short time.”

Andalusia had a standard being pregnant, solely noticing that Caper would transfer in her abdomen at odd instances. She needed to be induced as a result of her son was previous his due date however didn’t assume something of it – and she or he definitely didn’t count on any medical points.

“He was born with fluid in his lungs,” she says. “They had been fearful about there being an an infection. He was born not respiratory, he was code blue. And so he simply began off instantly within the NICU [neonatal intensive care unit].” 

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From there, issues started to worsen. Andalusia recollects seeing Caper’s eye twitch and considering that she was witnessing a seizure. Nevertheless, when she requested the medical doctors if she was right, they shut her down. “They stored saying no,” she says.

Additionally they “stored denying” her and her husband Charles’ requests for an electroencephalogram (EEG) take a look at, which measures electrical exercise within the mind, once they observed Caper’s ft twitching. 

Ultimately, the fearful couple despatched a video on to the neurologist on-call at UCLA Santa Monica, who lastly ordered an EEG. Caper was 7 days previous.

“We lastly acquired our EEG. They are saying it’s going to be a 24-hour EEG. If nothing occurs, then it’s more than likely not seizures or it’s undoubtedly not seizures,” Andalusia says. “And inside half-hour of the EEG being on my son at one week previous, medical doctors began dashing in with intervention treatment. He had been seizing consecutively for the primary half-hour of the EEG.” 

“He was seemingly having one consecutive seizure for this whole first week of life,” she shares. “After half-hour, seizures trigger mind injury. So he was seemingly getting one week’s price of mind injury already out of the gate. And it’s potential that he was having seizures in utero and that’s why his motion was so irregular.” 

As soon as medical doctors realized one thing was unsuitable with Caper, he was given an MRI. That’s once they found that he had a mind malformation on his left facet referred to as a hemimegalencephaly, or HME. The situation is extraordinarily uncommon — in accordance with the Youngsters’s Nationwide Hospital, it solely impacts a handful of youngsters a 12 months — and the one strategy to diagnose it in utero is with an MRI. 

“We’d by no means have recognized as a result of most pregnant girls aren’t getting MRIs,” Andalusia says. “They informed us as quickly as they gave us the prognosis that just about the one course of therapy could be to get a hemispherectomy, which is a surgical procedure to take away the left facet of the mind completely.” 

On Dec. 28, 2023, when Caper was 4 weeks previous, he had his surgical procedure. Within the hour main as much as it, he suffered six seizures.

Two weeks after the surgical procedure, he was discharged from the hospital and allowed to go dwelling. Not lengthy after, the seizures began up once more and the household was informed that Caper would want a second surgical procedure to take away extra items of his mind.

“The primary surgical procedure had a 60% probability of giving him seizure freedom, and the second surgical procedure had a 50% probability of giving seizure freedom,” Andalusia says. “It didn’t give him seizure freedom.” 

Andalusia describes Caper’s time spent within the hospital after his second surgical procedure as “terrible,” saying that they felt like they may see him regressing.

“That was sort of the final possibility for him, was this surgical procedure, and it wasn’t as profitable as we’d hoped,” she says. “After which you may have quite a lot of remorse as a mum or dad permitting your child to undergo one other hospitalization and having to begin his restoration journey throughout.” 

“He can’t maintain his head up,” she continues. “We see quite a lot of different youngsters who’ve undergone this surgical procedure months later than Caper did, who can maintain their head up.”

Evaluating Caper to different youngsters’ instances has been troublesome, as Andalusia admits “it’s laborious to see different youngsters succeeding when yours really feel up to now behind.”

After his second surgical procedure, Caper had his treatment elevated. Right this moment, he nonetheless suffers just a few seizures every week, however often not multiple a day. All through his journey, he has additionally been given a prognosis of cerebral palsy and epilepsy.

“I believe we had been in shock at that time,” she shares of studying that Caper had cerebral palsy. “I had been having not more than two hours of sleep a day for that week, and I used to be completely happy to lastly have solutions and that they lastly took us critically. We had been checked out like paranoid first-time mother and father.”

As she got here to phrases with Caper’s prognosis, Andalusia says she began “making negotiations” in her thoughts. 

“You make concessions and also you’re like, ‘Nicely, I hope he can nonetheless have a romantic relationship sooner or later,’ and then you definitely understand perhaps he won’t ever have the ability to have that,” she says. “And then you definitely’re like, ‘Oh my God, I hope he can simply talk with us what he likes,’ and he would possibly by no means have the ability to try this. You begin mourning the life that you just needed in your child and he’ll by no means have.” 

As of now, Caper sees at the very least seven totally different specialists a number of instances a 12 months on the hospital. His subsequent surgical procedure possibility is for seizure discount and can contain an implant that medical doctors will put in his mind to stimulate his mind exercise, because of having surgical procedures. However he gained’t be a candidate for that till he’s older. 

“At the moment, he’s on 5, trying-to-be-six, totally different anti-epileptic medicines and he’s nonetheless having seizures,” Andalusia says. “That’s rather a lot. Most individuals discover seizure freedom on one or two medicines, and Caper does have a really extreme case.” 

With Christmas just a few weeks away, Andalusia and her husband are excited to rejoice Caper’s first “official” vacation at dwelling, since he was within the hospital throughout Christmas final 12 months. 

“We left the Christmas tree up 12 months spherical, trigger we expect he actually likes the lights on the tree,” Andalusia says. “We haven’t actually deliberate something actually, however we’ve acquired quite a lot of household domestically that’ll most likely come collectively and simply do Christmas traditions.” 

Though she’s been capable of lean on relations for assist all through this time, Andalusia says that as a result of Caper wants 24/7 monitoring and that his care will change as he hits new milestones, it’s laborious to depart him with anyone else. 

“Even when we practice someone on learn how to care for him, as issues develop with him, as he begins consuming strong meals and isn’t simply consuming by the bottle, the people who we belief to care for him should be re-trained on learn how to care for him,” she says. “And it’s laborious to belief individuals to look after him as carefully as we do.” 

Andalusia, who works as an assistant mission supervisor for a images studio, remains to be full-time at her job whereas additionally caring for Caper. It’s been hectic attempting to steadiness each of these tasks, however she says she will be able to’t afford to lose her job.

“We have now not been supplied medical health insurance from the state, despite the fact that his circumstances and diagnoses are extreme sufficient that he ought to have certified for Medical,” Andalusia says, including that Caper is on her medical health insurance from her firm. “Caper’s first surgical procedure was $5 million, and we solely needed to pay our most out of pocket.” 

As she navigates an inconceivable state of affairs of taking good care of her son whereas additionally attempting to be current at work, Andalusia says it’s laborious generally to not blame herself. “There’s solely a lot of me to go round,” she says. 

For Andalusia, the one shiny spot has been connecting with different households and children who can relate to what Caper has gone by. Andalusia runs her son’s social media accounts and has been capable of finding a neighborhood of assist by Fb and Instagram. 

The household was additionally capable of attend Epilepsy Consciousness Day at Disneyland simply earlier than Thanksgiving this 12 months, the place they met one other household with a 13-year-old daughter who has epilepsy. 

“You see someone who’s acquired a distinct prognosis than Caper, however she appears to be doing so nicely. And right here she is at Disneyland!” Andalusia says. “That’s perhaps the place we’ll be in 12 or 13 years – again at Disneyland, dwelling life and making pals and taking day without work work.”

Andalusia and Charles’ family and friends have arrange a GoFundMe for them and are hoping to lift $100,000 for them. There’s nonetheless an extended highway forward for Caper — on the time of their PEOPLE interview, the household had simply been informed that he’s seemingly blind.

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

“Don’t ask your medical doctors for one thing, inform your medical doctors you need one thing and belief your intestine,” Andalusia says. “Sadly, Caper’s long-term final result has been severely affected by individuals us like paranoid mother and father. I keep very vocal and really open about what we’re going by in hopes that someone overhears me on the Web or in individual and may chime in with, ‘Oh my gosh, we’re coping with the identical factor,’ or, ‘We’ve been there.’”