Late last month, longtime Midlake band member McKenzie Smith and his wife, Felicia, weren’t sure if their unborn son, Garrett Noble, would survive very long after birth or be born alive at all.
“The day we delivered (Noble), all of our family came into town because we were prepared for the worst — him passing away,” Felicia remembers.
The Smiths’ worries began five weeks earlier, a time Felicia calls the “homestretch of pregnancy,” when they received the kind of news that no parent hopes to hear. Their baby had a rare disorder affecting his brain, which was discovered after multiple anatomy scans and a fetal MRI. Felicia says their doctor had hoped to give them a better prognosis, but instead gave them one of the worst ones possible.
“(The doctor) walked us into the office, and she welled up,” Felicia says. The couple found it unusual to see a doctor crying in front of them, and immediately prepared for the worst. They learned that Noble had developed semi-lobar holoprosencephaly, a moderate-to-severe form of the disorder in which the left and right hemispheres of the brain do not separate. At this point, all the Smiths could do was wait until Felicia's scheduled induction to know what their next step would be.
"It was brutal to wait five weeks to see what was going to happen," McKenzie says. “All we heard (the doctor) say was 80% of children don’t make it through the first year.”
After that, Felicia says, she had an out-of-body experience and “lost it.”
But Noble, the Smiths say, is meant to be here, and they count each day with him as a blessing. The night before finding out they were pregnant with their last child, McKenzie says he was putting their now 3-year-old daughter Mercy to bed, when he started thinking about the possibility of them having a son. He began thinking of names.
“I wanted something that sounded noble,” he says. “So I thought, ‘Well, what about Noble?’” Two days later, they got a positive pregnancy test result. After finding out they were having a boy, they decided to name him Garrett Noble, after McKenzie’s brother.
Approximately five weeks into gestation, Noble developed the disorder, which affects about one in 10,000 babies. In most cases, the disorder results in a short life expectancy, a need for feeding and breathing tubes and a lifelong inability to walk or talk.
“They told us we will learn his grunts. We heard that, and both lost it,” Felicia says.
Many babies with the disorder are also born with facial abnormalities, but from the outside, Noble looks like a perfectly healthy newborn, something that has made this reality even harder for the Smiths to process. For now, Noble is able to nurse and bottle feed, which is a major achievement.
The Smiths say they are slowly beginning to learn their new normal with a special needs child and trying to prepare themselves for an unknown future filled with health complications, from side effects caused by medications to courses of treatment. McKenzie says Noble failed his hearing test in the hospital after he was born, which is not uncommon, and they still plan to introduce him to as much music as possible.
McKenzie is the Grammy Award-winning drummer for Denton-based Midlake and co-owns Redwood Studios with bandmate Joey McClellan. But McKenzie has taken off work the past couple of months because of Noble’s condition, adding to the family's financial difficulties. Felicia is a trauma nurse and has taken maternity leave but will have to return to work to help with the family’s income. After spending a week and a half in the hospital and seeing specialists, the Smiths decided to start a fundraiser to help with the mounting medical bills.
McKenzie posted the link to the HelloFund fundraiser to his Facebook page eight days after Noble was born, and friends began donating what they could. He wrote in a Facebook post: “But while we struggled, we were immediately surrounded by friends and family who encouraged us, prayed with us, lifted us up, brought us food, helped with house projects and showered us with such an overwhelming amount of love and support, it literally brought us to our knees. Those gestures gave us the strength and hope to start planning for life with a special needs child with a limited life expectancy … We have no idea how long he will be with us here on this earth, but we will love him each and every day we have with him.”
The Smiths are a little over the halfway mark to their goal of $50,000. They say they're surprised and humbled by how quickly they have been able to raise the money, and McKenzie says he's grateful to live in a town with so many friends who have supported his family.
Eric Pulido, fellow Midlake bandmate and friend of McKenzie's since they were teenagers, says he knows how powerful music and the arts can be as a medium for community, awareness and support, and has started preliminary talks with other musicians about a music festival in Noble's honor, tentatively called Noble Fest.
"We’re optimistic that this could be a great annual event for an amazing cause," Pulido says. "In the heavy wake of things, we wanted to create something positive that could not only serve to help their family but be an opportunity to help others in a similar situation. A concert or festival in our hometown, hosting artists that we’ve become close with over the years seemed like a natural path."
Although the Smiths say they mourn the idea of having a typical, healthy baby, their circle of friends and family who have rallied by their sides have helped tremendously. They also say they have a strong church community at Cross Timbers Church in Denton, where McKenzie also plays music.
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“Everyone asks us, ‘How do you get through this?’ and I don’t know what to say,” Felicia says. “Sometimes you have friends or family who say, ‘Oh, we’re praying for you’ and it’s, like, an off comment. But I feel like we’re really lifted up by it.”
To make a donation for Noble Smith, click on the link below: