Malakhi De Leon, Bakersfield

Demi Dominguez and Xavier De Leon were engaged and enjoying their lives when a little surprise came: Demi announced that she was pregnant. Xavier was scared but excited. Demi was working as a behavioral therapist helping autistic children and about to graduate with her bachelor's degree in psychology, then proceed to continue to get her master’s degree. Xavier was working at the time and he planned on attending barber’s school. He was looking forward to building a life with his soon-to-be wife and his soon-to-be-born child. Xavier was incredibly grateful for both of them, and everything he had been blessed with.

Excited to share their joy with their family, Xavier and Demi planned a gender reveal party. They wanted to celebrate life with the people that mattered the most to them.

When they found out they were having a boy, Xavier was overjoyed. They wanted to give him a name with meaning. Xavier prayed about it, picked up the bible, and found “Malakhi,” which means messenger or angel. Demi agreed that was the perfect name for him.

Demi monitored her pregnancy closely. It was normal and complication-free until the eighth month, when she began showing classic signs of preeclampsia, a known pregnancy complication. But Demi’s symptoms and concerns were not taken seriously, and she was sent home without treatment multiple times. After an 18-hour hospital stay, during which she never saw the doctor, Demi was sent home one last time. She had a seizure in the night and died in Xavier’s arms.

Devastated by his fiancée’s death, Xavier was hopeful when he learned that his baby was still alive. But it took too long for Malakhi to be delivered by emergency C-section. When Xavier first saw Malakhi, he was all alone and in a full seizure. No one was working on him. Xavier put his hand on him, and his body stopped shaking. It broke his heart.

In the ICU, Malakhi lost precious hours as his doctor tried to enroll him into a clinical study. It was only after the study rejected Malakhi that Xavier learned there was another option – transferring him to a bigger hospital that would have more resources to save his son.

When Malakhi was finally transferred by helicopter 130 miles away to the new hospital, the doctors there told Xavier that a lot of mistakes had been made. The medical providers tried to save him, reinserting an incorrectly placed umbilical vein catheter and taking other emergency measures. Ultimately however, they told Xavier they could not save his son.

With all of his and Demi’s hopes and dreams for their son flashing through his mind, Xavier made the decision that no father should ever have to make. He chose to end life-saving measures for his son.

Xavier took Malakhi into his arms and sat in a big rocking chair, memorizing his son’s face. Xavier said, “his last breaths sounded like hiccups.” He was given the opportunity to change his diaper for that one and only time.

Xavier called upon two pastors that came to the hospital and prayed over Malakhi just in time.

Xavier allowed each family member to hold Malakhi. He then took his son back into his arms and rocked him, watching the life escape him as he took each last breath. Like his fiancée, Malakhi died in his arms. He lived for just 19 hours.

California’s 45-year-old cap on compensation in cases when a baby dies from medical negligence makes it almost impossible for families like Xavier’s to find an attorney. Xavier feels that the cap is partially to blame for his son’s death. It allowed Demi’s medical provider, who had a history of past disciplinary action for negligence, to continue to practice with no accountability. He believes that the 1975 cap needs to be updated to give families like his the chance to seek justice. Xavier has secured legal representation, but only because his family agreed to pay all the costs upfront.

Xavier hopes that, in sharing the story of his son’s life, he can make positive change and make health care safer for other babies in California.