Mom Talk: Raising A Son With Treacher Collins Syndrome
Written by Alicia Johnson
Photography by Photo Courtesy of Alicia Johnson
Today’s Mom Talk has been a long time in the making. We first received an email from new mama Alicia Johnson last September, asking to share her “not so typical pandemic baby” story. As sometimes happens, her email got buried under many others. But, luckily, when we finally circled back with Alicia earlier this year, she was not only down to complete her essay about birthing a child and his surprise Treacher Collins Syndrome diagnosis, she also had extra context to add now that she has nearly one year of motherhood under her belt. Read about her experience birthing and raising her beloved son Linden (a.k.a. “Lindo”) below.
A lot of thought went into how I wanted to use this space. When I initially reached out to MOTHER, I was a first time mother who was fresh out of our NICU stay and wanting to champion our experience and my son’s official Treacher Collins Syndrome diagnosis. I didn’t know of Linden’s condition before he was born (this spontaneity is common amongst the TCS community). So, at the time, I knew that we had a unique story to tell: A mother who’d given birth prematurely to a baby who’d been diagnosed unexpectedly with a rare craniofacial syndrome during a pandemic.
At the time, I was so outraged by my and my partner’s inability to be with our child together in the hospital, for his now seemingly short, 56+ days, that I needed an outlet. I used my personal social media feeds to reach out to others, educate myself, vent, and eventually accept my reality.
There’s a saying that no one plans to be in the NICU, and nearly 11 months later, I still wrap myself in all the love that I need when I think of nights sent home without my baby. When I think of the first, second, and every night that I spent 15+ miles away from a child who’d I’d only laid eyes on for seconds at birth, it’s hard not to swell up.
Those months in the NICU were the most transformative. Not being pregnant, not having Linden—but every moment thereafter.
There’s a badge of honor that comes with the experience of parenthood, but a stop at the NICU coupled with a few life-saving surgeries and the most isolating of pandemic hospital visits gave me a totally different lane into this reality.
I’ve been able to form community around being the parent of a child with special needs and ultimately, now get to be apart of an elite group. Something I’m proud of.
We have found our stride in daily cares—I took the reins in my son’s everything and immersed myself in all areas of his needs, including learning sign language and am finding the joy in having a “rare diamond,” as my fellow TCS mama likes to call our babes.
It feels good having a boy as special as Linden. Sure, I’m concerned about how others will accept him (it’s why I advocate, it’s why I’m writing this), but Linden’s life will never lack love—he’s a really interesting child and we find ourselves constantly fascinated by him. I love him more than anything.
What makes Linden unique?
Linden doesn’t have ears! Can you imagine after your emergency c-section having the first words you hear from your partner be, “He doesn’t have ears”?! Yet another rare condition called Microtia Atresia (Latin for “little ear”). Luckily, Linden has internal hearing parts, so in addition to learning sign language, he wears a BAHA (bone conducting hearing aid) on his head, a headband that helps him hear.
Linden’s ears won’t grow. I love to nibble on his little nubs.
We nicknamed him “Lindo,” meaning “cutie” or “beautiful” in Spanish. Fitting!
Linden was born at 33 weeks. He was 6 weeks premature and spent 2 months thereafter in the care of Children’s Hospital—it’s where I learned to be a mother and to care for Lindo.
Linden has a tracheostomy and breathes through his neck, a g-tube, and feeds directly into his stomach.
What’s Next for Lindo and Our Family?
This summer we anticipate Lindo’s first surgery post-NICU. The third major surgery of his life and a huge milestone for him developmentally, the repair of his cleft palate. This surgery will allow Linden to learn to eat, speak, and breathe correctly—this will also have a major effect on his airways (nose and mouth). Luckily, we have his trach, a secure airway in his neck, to help him through his surgeries.
We’re looking forward to celebrating our birthdays together out of the hospital! I spent my 35th birthday in an emergency scare with Lindo and a week and half later, he was born! We’ve been invited to Esalen and look forward to a family retreat.
Lessons I’ve Learned & Lessons I’m Learning
I’ve learned how to love. How to listen. How to show up.
I’m learning how to nurture myself. How to nurture my son. How to nurture my family.
I’ve learned a lot about routine, time management, and organization. I’ve really had to step outside of myself and create the parent I knew I could be. It didn’t come naturally.
How We Manage
We rely heavily on our tribe. We are not alone! One feels that way in the beginning, but I was flooded with soooo many NICU success stories, every one of them uplifted us during our stay. We also rely heavily on one another as parents.
Becoming the parent of a medically complex child inevitably means you learn a lot about the medical system (and how to advocate for your child) very quickly. There’s no way to prepare yourself, but there is a way you can prepare yourself if you ever meet a family of a special needs child.
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