Transforming Moments

Noah’s Story

Good Intentions

Jackie’s love for her son Noah can only be described as contagious. Noah, in turn, is an easy child to love. He’s charming and easy-going, with a beaming smile that captures the look of a happy childhood. “He waves and smiles at everybody,” says Jackie. “He loves people.”

Noah’s grin is often accompanied by a series of excited gestures and word-like babbles, which are his way to connect with the world around him.

Noah, who is 3, was born with CHARGE syndrome. CHARGE refers to a specific set of birth defects ranging from mild to life-threatening. Its name comes from the first letters of the syndrome’s common features which include coloboma, (an abnormality of the eyeball), heart malformations, narrowed nasal passages, and ear abnormalities. CHARGE affects approximately one in 10,000-12,000 births. The cause is unknown.

The most significant challenge Noah faces is combined hearing and vision loss. He has blind spots in both eyes, moderate hearing loss in his right ear and severe loss in his left ear. Due to related heart, nutrition and growth issues, children with CHARGE syndrome have a tendency to be smaller than average. Noah, according to his mom, is about the size of an 18-month-old.

Treatment involves a combination of medical care, surgery and therapy programs, which is where Children’s Hospital’s therapy services come into play. Because of difficulties he faces, the entire process of Noah’s development – especially in terms of speech, language and motor skills – is delayed. Without resolving these issues at a young age, Noah’s cognitive ability and other developmental skills could be compromised if he falls further behind.

Good Start

Noah’s developmental program first began at 3 months when he was adopted by Jackie.  In addition to being a devoted parent, Jackie, who has two other adopted sons – Jacob, 6, and Keegan, 5, has a strong background in working with children who are hearing or visually impaired. She is a vision teacher for the City of Richmond and has worked as a sign interpreter for many years.

In the Spring of 1999, Jackie was taking a blind student on a fieldtrip to the Capitol when she asked a parent chaperone about what life was like with three boys. Jackie mentioned that she was considering adopting a child who is deaf, blind, or hearing or visually impaired. The parent she talked with happened to work for an adoption agency, and within weeks, the Lowry family had grown to include 3-month-old Noah.

Having two older brothers is inspirational for Noah developmentally, and in so many other ways. “He just wants to keep up with them,” says Jackie. Jacob and Keegan do their part by treating him as any older brothers would. They let Noah follow them around and roughhouse with them in the back yard, but they also take the time to connect with him. “They’re always asking me what’s the sign for this, what’s the sign for that,” says Jackie.

First Steps

Noah began physical therapy at 8 months old. At that point, according to his physical therapist, Cynthia Richards, MS, PT, Noah had just learned to roll over, but was unable to sit up independently. Therapy sessions focused on building his strength and endurance and included exercises to stimulate his trunk strength, encourage weight-bearing in his arms and legs, and work on balance, which was affected by his hearing problems.

Cynthia describes Noah’s progress as slow, but steady. After more than a year of therapy, Noah reached a major goal by taking his first steps. “He crawled for a very short time,” says Jackie, “but once he realized he could be mobile, he wanted to get up right away.”

Noah’s progress has continued steadily since then. His mobility allows him to explore the world around him, which is critical to a young child’s cognitive development. With determined toddler steps, using his arms to balance, he chugs along and can now catch up to his brothers, usually reaching Keegan first as Jacob, who loves to run, is quick on his feet and sprints from place to place.

From a physical standpoint, according to Cynthia, Noah is about 9 months behind what is considered standard for his age for gross motor skills, which relate to the larger muscles in the arms, legs and torso. His therapy sessions will continue to focus on these skills as he masters walking up and down steps, jumping, and ball-related activities like kicking and throwing. What will also continue to help Noah is that Jackie, an athlete who plays soccer for a local women’s league, reinforces therapy lessons in Noah’s daily life. “His mom’s high activity level and that of his older brothers definitely have been an attribute and a good role model for Noah,” says Cynthia.

Communication Skills

Noah began speech therapy when he was 18 months old, right around the time his hearing loss was confirmed. By this age children usually have a 15-word vocabulary, but, according to Barbara Lent, M.Ed., CCC/SLP, his Speech/Language Pathologist, at that point Noah’s only vocalizing was grunting noises and his only way to communicate was pointing.

Noah does have hearing aids, but although these devices amplify sounds, they do not simply give Noah the ability to hear normally. “His impairment impacts his ability to discriminate sounds,” says Barbara, citing the example that, for Noah, the words “book” and “look” may sound exactly the same.

For children with a speech delay, sign language is the first step in communication. Well before they say their first words, children generally use gestures such as waving a hand to say “goodbye.” Barbara co-treats with Occupational Therapist Kari Glasgow, OTR/L. Together, they help Noah complete the developmental sequence he needs to go through in order to learn speech and language. Noah’s dual areas of hearing and vision loss make this process somewhat complicated. “We need to tap into more of his senses and use outside input to help him understand more,” explains Kari.

For a typical exercise, Noah sits at a child-size wooden table with Barbara facing him directly. She shows Noah a toy cat and repeats the object’s name and the sound it makes, as she monitors his expressions and verbalization. At the same time, Kari sits close to Noah’s right, working on his fine motor skills by using hand-over-hand therapy techniques (her hand helping his sign) to connect the object he is seeing and hearing to its corresponding sign.

According to Jackie, their teamwork has made a huge difference, especially in terms of comprehension. “Receptively, Noah understands a ton,” Jackie says. “Expressively it’s a little harder.”

But recently Jackie has started to see her son sign spontaneously. “We were at a Harvest Festival at Crump Park. Someone came by with dog and he did the sign for dog; I didn’t know he even knew a symbol for a dog. Then we saw a pig and he did that,” she explains.

Noah now uses about 25 signs, a number of consonants and vowels, and says a few words like “Momma,” “my” and “no.” He’s made dramatic progress and is attempting to make more sounds and say more words.

Barbara and Kari will continue to work with Noah on signing combinations, such as “More cookie” rather than just “more” or “cookie.” They cannot predict whether he will eventually rely only on speech or always use a combination of sign language and speech; but his steady progress is a good indicator of future progress. “He’s interested in interacting with others,” says Barbara. “It’s a strength for him. He wants to communicate however hard it is for him.”

Jackie’s constant support is another good indicator. “She’s incredible,” says Kari. “It’s an incredible carryover of any home treatment program we could dream up.”

Teamwork

Jackie credits much of Noah’s progress to the relationship they have developed at Children’s Hospital. She trusts the staff, appreciates their continued support and says that it simply feels good to bring Noah each week. “They are genuinely interested in him,” she says. “They treat us both as part of the team.”

Jackie also recognizes that it is Noah’s own intent that will make a difference in the long run, “He really tries even though it is hard for him.”

Recently, at one of his brother’s soccer games, Jackie remembers seeing Noah walk up to a very tall man. Noah started pulling on the man’s pant leg, making noises, babbling excitedly and signing to him, trying to tell him that a train was going by.

Noah knows about trains because when his big brothers see a train, firetruck or bus pass by, they do everything they can to make sure Noah doesn’t miss this simple childhood thrill. They point and yell excitedly making sure their little brother can see it, hear the noise it makes and hear its name. They even know how to sign it for him.

Like his devoted mom and his team from Children’s Hospital, they want to see Noah succeed. And luckily the pieces are starting to fall into place. “Things are starting to click for Noah in every area,” says Jackie. “Therapy has made a huge difference. Everything is just starting to open up for him.”

Back to Transforming Moments

The information on this site is provided for informational and educational purposes only; it does not contain specific medical advice. If you have specific health questions or problems, consult a health care professional for personal medical advice.