After welcoming her son Caper in November 2023, Andalusia Mesa could not wait to fulfill her child boy and maintain him in her arms. However her pleasure rapidly turned to concern when, by means of the haze of her ache treatment, she regarded across the room and realized that every one the docs and nurses have 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 remembers 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 anticipate any medical points.
“He was born with fluid in his lungs,” she says. “They have been apprehensive 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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The Mesa Household
From there, issues started to worsen. Andalusia remembers seeing Caper’s eye twitch and considering that she was witnessing a seizure. Nonetheless, when she requested the docs if she was appropriate, they shut her down. “They stored saying no,” she says.
In addition they “stored denying” her and her husband Charles’ requests for an electroencephalogram (EEG) check, which measures electrical exercise within the mind, after they seen Caper’s toes twitching.
Finally, the apprehensive 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 almost certainly not seizures or it’s positively not seizures,” Andalusia says. “And inside half-hour of the EEG being on my son at one week previous, docs began dashing in with intervention treatment. He had been seizing consecutively for the primary half-hour of the EEG.”
“He was doubtless having one consecutive seizure for this whole first week of life,” she shares. “After half-hour, seizures trigger mind injury. So he was doubtless getting one week’s value of mind injury already out of the gate. And it’s doable that he was having seizures in utero and that’s why his motion was so irregular.”
The Mesa Household
As soon as docs realized one thing was fallacious with Caper, he was given an MRI. That’s after they found that he had a mind malformation on his left facet referred to as a hemimegalencephaly, or HME. The situation is extraordinarily uncommon — based on the Children’s National Hospital, it solely impacts a handful of kids 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 analysis 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 solely.”
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 residence. 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% likelihood of giving him seizure freedom, and the second surgical procedure had a 50% likelihood of giving seizure freedom,” Andalusia says. “It didn’t give him seizure freedom.”
The Mesa Household
Andalusia describes Caper’s time spent within the hospital after his second surgical procedure as “terrible,” saying that they felt like they might see him regressing.
“That was type of the final choice for him, was this surgical procedure, and it wasn’t as profitable as we’d hoped,” she says. “After which you may have loads of remorse as a mother or father permitting your child to undergo one other hospitalization and having to start out his restoration journey throughout.”
“He can’t maintain his head up,” she continues. “We see loads 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’ circumstances has been tough, as Andalusia admits “it’s arduous to see different youngsters succeeding when yours really feel to this point behind.”
After his second surgical procedure, Caper had his treatment elevated. At present, he nonetheless suffers a couple of seizures per week, however often not multiple a day. All through his journey, he has additionally been given a analysis of cerebral palsy and epilepsy.
“I feel we have 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 significantly. We have been checked out like paranoid first-time mother and father.”
The Mesa Household
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 notice perhaps he won’t ever be capable 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 may by no means be capable to do this. You begin mourning the life that you simply wished on your child and he’ll by no means have.”
As of now, Caper sees a minimum of seven completely different specialists a number of instances a 12 months on the hospital. His subsequent surgical procedure choice is for seizure discount and can contain an implant that docs will put in his mind to stimulate his mind exercise, on account of having surgical procedures. However he received’t be a candidate for that till he’s older.
“At the moment, he’s on 5, trying-to-be-six, completely different anti-epileptic drugs and he’s nonetheless having seizures,” Andalusia says. “That’s quite a bit. Most individuals discover seizure freedom on one or two drugs, and Caper does have a really extreme case.”
With Christmas only some weeks away, Andalusia and her husband are excited to rejoice Caper’s first “official” vacation at residence, since he was within the hospital throughout Christmas final 12 months.
“We left the Christmas tree up 12 months spherical, trigger we predict he actually likes the lights on the tree,” Andalusia says. “We haven’t actually deliberate something actually, however we’ve acquired loads of household domestically that’ll most likely come collectively and simply do Christmas traditions.”
The Mesa Household
Though she’s been in a position to lean on members of the family for help 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 arduous to depart him with anyone else.
“Even when we practice any individual on tips on how to deal with him, as issues develop with him, as he begins consuming strong meals and isn’t simply consuming by means of the bottle, the people who we belief to deal with him should be re-trained on tips on how to deal with him,” she says. “And it’s arduous to belief individuals to take care of him as carefully as we do.”
Andalusia, who works as an assistant venture supervisor for a pictures studio, remains to be full-time at her job whereas additionally caring for Caper. It’s been hectic making an attempt to stability each of these obligations, however she says she will’t afford to lose her job.
“We now have not been offered medical health insurance from the state, though his situations 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 unattainable scenario of taking good care of her son whereas additionally making an attempt to be current at work, Andalusia says it’s arduous typically to not blame herself. “There’s solely a lot of me to go round,” she says.
The Mesa Household
For Andalusia, the one vivid spot has been connecting with different households and youngsters who can relate to what Caper has gone by means of. Andalusia runs her son’s social media accounts and has been capable of finding a group of help by means of Fb and Instagram.
The household was additionally in a position to 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 any individual who’s acquired a unique analysis than Caper, however she appears to be doing so properly. 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 associates and taking day off work.”
Andalusia and Charles’ family and friends have set up a GoFundMe for them and are hoping to boost $100,000 for them. There’s nonetheless an extended street forward for Caper — on the time of their PEOPLE interview, the household had simply been informed that he’s doubtless blind.
By sharing her household’s story, Andalusia hopes others are inspired to advocate for themselves in medical settings.
“Don’t ask your docs for one thing, inform your docs you need one thing and belief your intestine,” Andalusia says. “Sadly, Caper’s long-term consequence 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 means of in hopes that any individual overhears me on the Web or in individual and might chime in with, ‘Oh my gosh, we’re coping with the identical factor,’ or, ‘We’ve been there.’”
