After the joyous arrival of her son Caper in November 2023, Andalusia Mesa was eager to hold her baby. However, her happiness soon turned to worry when she noticed the panic among the doctors and nurses due to Caper's purple complexion and lack of breathing. The Los Angeles-based mom recalls, "Everyone in the room was freaking out as he was born with fluid in his lungs and not breathing initially."

Challenges from the Start

Andalusia had a normal pregnancy but had to be induced as her son was past his due date. She didn't expect any medical issues. Caper was quickly whisked away to the NICU. Later, they noticed his eye twitching and feet twitching, but the doctors kept denying their requests for an EEG test. Eventually, an EEG was ordered when Caper was 7 days old, and it was discovered that he had been having consecutive seizures for the first week of his life. 1: The discovery of a brain malformation called hemimegalencephaly (HME) on Caper's left side was a shock. Andalusia says, "We would never have known as most pregnant women don't get MRIs. The only way to diagnose it in utero is with an MRI." 2: Caper underwent surgery on December 28, 2023, when he was 4 weeks old. In the hour before the surgery, he suffered six seizures. After two weeks, he was discharged but the seizures started again, and he needed a second surgery to remove more brain pieces.

Post-Surgery Struggles

Andalusia describes Caper's time after the second surgery as "awful." She says, "We saw him regressing, and it was hard as parents to go through another hospitalization and start his recovery journey all over." Caper still suffers a few seizures a week and has been diagnosed with cerebral palsy and epilepsy. 1: Andalusia shares, "We were in shock when we learned about the cerebral palsy. We had been sleep-deprived for a week, and finally getting answers was a relief, but also a realization of the challenges ahead." 2: With Christmas approaching, the family is excited to celebrate Caper's first "official" holiday at home. They have to balance Caper's 24/7 monitoring and his changing care needs with Andalusia's work as an assistant project manager.

Support and Advocacy

Andalusia has found support through social media and by connecting with other families. She says, "Connecting with other families has been a bright spot. It gives us hope and shows that there is a way forward." 1: The family also attended Epilepsy Awareness Day at Disneyland and met another family with a child with epilepsy. This gave them hope for the future. 2: Andalusia hopes that by sharing their story, others will be encouraged to advocate for themselves in medical settings. She says, "Don't be afraid to speak up and trust your instincts. Caper's outcome could have been different if we had been more assertive."