LIHU‘E — On January 14, Madlynn “Lei” Lopes and Jesse Cole welcomed their son, Jesse Earl Cole, at Wilcox Medical Center in Lihu‘e, but the happy day came with dire news.
Soon they found themselves at Kapiʻolani Medical Center for Women &Children on O‘ahu because the newborn was having multiple seizures in quick succession.
Baby Jesse was born weighing five pounds, seven ounces, with a rare condition that has him missing a massive part of his brain — a condition called schizencephaly. He’s also been diagnosed with cerebral palsy, hydrocephalus, optic hypoplasia and pulmonary hypertension — a situation that has the family flying back and forth to and from O‘ahu for frequent medical check-ups.
Schizencephaly occurs in one out of every 64,935 births, according to the advocacy organization We Are RARE, which campaigns to raise support for those with rare brain disorders.
The National Institute of Neurological Disorders and Stroke defines the birth defect as being characterized by “abnormal slits, or clefts, in the cerebral hemispheres of the brain” that can lead to developmental delays, paralysis, seizures and other health issues.
“Dad willingly flew with baby when he got medivaced. We almost lost him,” said Lopes, remembering the days following Jesse’s birth. “I couldn’t because I broke down, and tough decisions needed to be made.”
Now Jesse weighs 12 pounds and two ounces, and spent his first five long months in the world fighting for his life. The family has been traveling to O‘ahu at least once a month since he was born.
“We were told he had a couple of weeks to a few years to live,” said Lopes in a recent interview with The Garden Island. “He just got medivaced again last month because his head was swelling at an alarming rate. They took a CT (scan) and said we have a choice — to make him comfortable and put him in hospice care, or do an emergency shunt surgery to help drain fluids and the build-up of pressure that was on his brain stem.”
Lopes and Cole optioned for the surgery to try and extend the life of their newborn son, and Jesse was discharged out of the hospital on June 4 with a list of check-up appointments to continue to keep him in stable condition.
“He isn’t able to lie flat because he sometimes aspirates randomly,” said Lopes. “So me and his father been out of work to care for him.”
Thursday, the family had another milestone to meet — an appointment on O‘ahu to check Jesse’s sight because doctors are concerned he’s blind.
With little information on the birth defect and other conditions at their fingertips, and so few people experiencing the same stresses as their family, Lopes said she’s been asking for help from the Kaua‘i community, as well as from various health officials.
“If anyone has any type of knowledge about this condition, we would really appreciate it,” said Lopes. “ We have done a lot of research but, of course, every case is different. His case is really severe, so can’t really relate to the people that we have found since their (kids’ conditions) are very mild.”
The cost for the family is more than just emotional. They’re racking up the bills for hospital visits and travel, as well as treatments, medications and other related expenses.
And most of it is coming out of their own pockets, especially with the presence of the pandemic complicating things like lodging. The ‘ohaha tried to stay at the Ronald McDonald House, but due to COVID-19 they were unable to accept the family. So, for now, they’re paying for hotels on their own.
Lopes said there are good days and bad days.
“I do have good days, but every single day the thought of losing him at any time tears me down,” said Lopes. “I don’t go to any support groups. I only have my family and friends who try their best to help us get through each day.”
She continued: “Some days I feel super positive, and some days I just shut down and can’t accept this is my son’s life. We can’t do anything at all to change it, either, so I feel it’s my fault. I am his mother. I’m supposed to make sure he’s OK and safe.”
The family has a Facebook fundraising page that contains updates on Jesse’s condition, as well as options for donations to help with travel or medical costs.
Find more info at facebook.com/donate/1702295186590763/?fundraiser_source=external_url
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Stephanie Shinno, features and community reporter, can be reached at 245-0424 or sshinno@thegardenisland.com.
