By: Nick and Cindy G.
Meet Zachary! He is three years old and was born with a rare syndrome called Cornelia de Lange Syndrome.
Zach is an incredibly resilient kid. He consistently deals with some discomfort daily. He struggles with hearing and is non-verbal, complicating communication and caring for Zach. Some of his biggest challenges include feeding, swallowing, digestive discomfort, gaining weight (failure to thrive), low muscle tone, severe acid reflux, small hands, limbs, and feet, a weakened immune system, and several developmental delays.
My wife and I have learned how to manage Zach’s needs, but we still need to get it right.
We are constantly learning new ways to help him as time goes on.
It has been a difficult journey, to say the least, filled with unpredictable twists, medical mysteries, and scary moments. That said, being his parents has been equally as rewarding.
Like many children with special needs, Zach’s story began much sooner than his birthdate. At our 20-week ultrasound, we were told of abnormalities specifically found on our son’s face and of a possible heart defect. After having additional testing to rule out specific genetic syndromes, we were told our baby was healthy. At our 28-week ultrasound, it became clear that things were not developing correctly for Zach. He was measuring growth under the first percentile. At this point, we began to have three ultrasounds a week and scans of his heart for the next month. At 32 weeks, my wife was hospitalized and put on bed rest until he was born prematurely at 33 weeks on April 12, 2021.
Hearing a doctor tell you something is not developing correctly with your unborn child is heartbreaking and terrifying.
You leave the hospital physically, but the feeling and impact this will have on your future child and your family never leaves you mentally. What is supposed to be a joyous and exciting time instead is a challenging, emotional, stressful, and soul-searching experience. We relied heavily on our Christian Faith and God’s Word to guide us through this difficult process. The entire pregnancy was full of vague information, countless hours of testing, and scary moments that my wife, Cindy, had to endure.
The experience was so different from our previous kids, Oliver and Vivianne, who are 6 and 5 years old. Immediately after birth, Zach was taken to the neonatal intensive care unit, hooked up to various devices, and kept in a bed that looked like a spaceship. He spent his first 54 days of life in the NICU at Central DuPage Hospital. At the time, we were right in the heart of COVID-19, and many of the COVID rules were still in effect at the hospital, especially in the NICU. About a week after his birth, we were able to confirm through more specific genetic testing that Zachary had a rare gene mutation of the NIPBL gene and was diagnosed with Cornelia de Lange Syndrome. Like most people, we were not familiar with the syndrome, and we were advised not to google. However, like any parent, we dove headfirst into our research to figure out what we needed to do to help our baby boy. What we found was heartbreaking and not very definitive.
With CdLS, there is a very broad spectrum.
The geneticist said repeatedly, “We will have to let Zach show us what he can do.”
The severity is unique from person to person. Despite everything life has thrown at Zachary, he always lights up a room with his infectious smile and laugh, highlighting his adorable dimples. Women gasp over his long eyelashes everywhere we go. For a child who has been through so much, he has the most amazing spirit and determination.
During Zach’s first year of life, he had to be sitting upright, even while sleeping, because of his severe acid reflux. Once he could lie down for short periods, he quickly figured out how to move on his back and roll around everywhere. When he was two, he learned how to army crawl. And most recently, after having major abdominal surgery, he showed us how strong he is by deciding to take his first steps in a walker. He navigates around our first floor like he has been doing it for years. Zachary never ceases to amaze us. He loves being around people when he can, and people gravitate towards him. He has the sweetest demeanor.
He will be starting preschool in the fall and receiving many different therapies while he is there. It is difficult for us to trust other people to step in and care for him because it’s visibly overwhelming for them. Zach requires a different type of care that most kids don’t need. Kids with special needs have exactly that: special needs. People who work with kids with special needs have extra training, resources, and live experience that give them the ability to react to almost any situation a child with special needs may go through.
Zach has been involved in several different therapies since coming home from the NICU. It has become a very important part of our new routine as a family. Zachary is involved in physical, occupational, developmental, nutrition, speech/feeding, and hearing therapies. We are also very dedicated to his medical care. He has seen several different specialists, including ear, nose, and throat, urologist, nephrologist, endocrinologist, cardiologist, audiologist, gastroenterologist, and physiatrist. Zach has had several different procedures in his 3 years of life, requiring him to be sedated five times, and has been hospitalized twice for weeklong stays. During his most recent hospitalization, he had a serious bronchospasm, which required him to be put on a ventilator after surgery. It goes without saying that our little guy has a very busy schedule filled with therapy and doctor visits. We do everything in our power to make Zach as comfortable as possible.
As parents of a CdLS child, each day has a new twist that we must react to and learn how to work through.
Anyone who has ever experienced having a child with developmental adversity understands how difficult this journey can be. Making more people aware of these families’ struggles creates a sense of empathy for them. The most amazing thing you can do for a family with a child with special needs is to find time to spend with them to gain perspective and understanding of what they go through daily. People who are not around children with special needs typically don’t know how to act or know what to say. Kids with special needs just want to be known, treated equally, and spoken about normally, like any other kid. Their journey is just different, and their adversities are more bountiful.
Every family goes through some sort of struggle and challenges that, most times, can be conquered. Kids with special needs have things that cannot be conquered or changed, even with modern medicine. Please be patient, try to understand, and be empathetic when you come across a family with a child with special needs. Our journey with Zach will be lifelong for my wife and me. He is not going to be able to live on his own. He’s always going to need our care and our support. He will not be able to experience some things in life that healthy kids will experience. His life will be different, which is okay. It is a tough thing to accept, but it’s the reality that our family and so many other families with children with special needs must accept.
Thank you for being here, for your support, and for taking the time to read this message.
Don’t be afraid to be involved, ask questions, and learn more about families’ journeys.
It may be tough for them to talk about, but it’s necessary and helps them heal and deal with the strong emotions that come with being a parent of a special needs child. Your awareness, empathy, and involvement in their child’s life are the greatest gifts you can give them.
Experiences are all we can take with us in this life.
Empathize a little deeper. Appreciate what you have a little more. Becoming more aware because perspective is one of the most powerful gifts we can experience and gain in this life. Everyone has something they are battling with that you may not know about.
From the bottom of our hearts, my wife, Cindy, I, and the rest of our family thank you for being a part of this wonderful cause. There are so many people who need our help in this world, and you chose to help the CdLS cause. Be safe, run fast, and pray for those around you.
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