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A Little Light Named Noah

Many hands treat a special boy from the tip of his nose to the end of his toes

3/2/2011 

On a cold January evening in a quiet labor and delivery room, a remarkable young couple finally held their expected arrival and named Noah wrapped up in blanketshim Noah. Casey and Rebecca Jackson knew their second child would require treatment for club feet. They were anxious but prepared. The Jacksons had already walked a difficult road with their firstborn, Ryan. The day they welcomed Noah’s big brother into this world, they had to kiss him goodbye.

“He lived for 10 minutes,” said Rebecca of her son born without kidneys. Ryan’s inherited condition had been misdiagnosed, and his parents had no idea they both carried a recessive gene for Fraser’s syndrome. Noah was born with the same autosomal congenital disorder as his big brother, a condition estimated to occur in only 4.3 of 1 million live births. “We knew there were problems right away,” said Rebecca. 

Mom with NoahWhen asked what thoughts went through her head that challenging day, she said, “I remember just being so happy that he was born. That he was here.” Rebecca shared another thought she’d had while holding newborn Noah. “I know how to deal with a baby who is dead. I don’t know how to deal with a child going into surgery.” She shook her head and smiled. “We were so concerned about the club feet, and they ended up being no big deal.”

Rebecca would later post a summary on her blog:

Our son, Noah Stone Jackson, was born with a very rare genetic disorder called Fraser syndrome. Among his many challenges are one “hidden Noah in the hospitaleye,” a narrow trachea (which required him to have a tracheostomy), an imperforate anus (which required a colostomy), difficulty swallowing (which required a G-Tube for feedings), the fusing of his vocal chords (which means he may never speak), and club feet (which are being corrected with braces).

Casey (also known as Kc) and Rebecca cuddled and bonded with their son while they awaited the medical transport team from Children's Hospital Central California assigned with the important task of taking Noah to the Hospital’s Level IIIc neonatal intensive care unit (NICU). “The people doing the transport were so amazing and tender,” said Rebecca. “They took a picture that we still have today.”

In the two years since that picture was taken, Noah has been under continual care from a collaborative team of doctors, surgeons, and other medical professionals at Children’s Hospital. His surgeries began in the NICU and continue to this day, but Noah no longer has club feet. The braces he wore have been retired.

Mom and dad with Noah“I think I told Rebecca to cross me off her list,” said Dr. Joseph Gerardi, medical director of pediatric orthopaedic surgery at Children’s. “Not that I don’t want to see her anymore, but it’s one less appointment she’ll have to make. He did so well with us we’re pretty much out of the picture.” Dr. Gerardi loves working in pediatrics. “I figured it would be the most fun way to come to work every day,” he said. His enthusiasm and passion for his work are obvious.

“Dr. Gerardi is just…” Rebecca searched for a worthy description. “I absolutely, absolutely love him,” she said. “His bedside manner is very optimistic. He has this amazing, gentle quality.”

Mom with NoahQuick to redirect such admiration, Dr. Gerardi preferred a different angle. “You should make the story about her,” he said of Rebecca. “She has this little light inside of her. How easy it would be to say ‘woe is me’ but she’s not like that.” Dr. Gerardi praised Rebecca for playing a big part in coordinating Noah’s treatments and procedures. “Like conducting an orchestra, she was intimately integrated into his care,” he said. “She would pull out her calendar and coordinate schedules for appointments and keep track of what needed to happen next.”

From Noah’s birth to this day, Rebecca has kept track of more procedures than she can count. “He’s had six or seven major surgeries and multiple scopes, MRIs and CT scans, which all involved general anesthesia and a hospital stay,” she said. After conferring with Kc, together they counted 10 surgeries and six bronchoscopes. 

Mom and dad with Noah at homeThe ongoing relationship between the Jacksons and Children's Hospital Central California began with a three-week stay in the NICU. “I remember walking in the room and having to scrub up and put on a gown,” said Rebecca of her first trip to see her son. “Once you learn the language and protocols it became routine, like a weird normalcy to a time that wasn’t normal.”

The skilled and efficient NICU team put the whole family at ease. “The kids were comfortable leaving him at night knowing that he was well cared for,” said Betty Smith, Rebecca’s mother. “They’ve all been incredibly compassionate and caring from the very beginning. We just felt like we were being cared for.”

A lineup of other pediatric subspecialists at Children’s have treated Noah for various complications related to Fraser’s syndrome. Dr. David Hodge, pediatric surgeon, performed Noah’s colostomy the day after he Noah being held in hospitalwas born. Dr. Michael Dunham, medical director of pediatric otolaryngology, gave Noah his life-saving tracheostomy a few days later. Dr. Peter Witt, medical director of pediatric plastic surgery, repaired Noah’s congenital hand anomaly by taking skin from the side of Noah’s palm to repair his webbed fingers. Dr. Devonna Kaji, medical director of pediatric urology corrected deformities of the ureter, and Dr. Reddivalam Sudhakar, medical director of pediatric pulmonology monitors Noah’s respiratory function. “Every step of his care everyone wanted what was best for him,” said Dr. Gerardi.

Noah’s family appreciates the incredible care they continue to receive at Children’s Hospital. “They’re so informative and answer all the questions that they can,” said Smith. “They spend as much time with you as you need, often coming back two or three hours after the surgery.”
 
Reflecting on the first few weeks of Noah’s life, Rebecca expressed her deep appreciation for the wisdom of a particular nurse, and the invaluable guidance she provided. “Nurse Liz loves to work with trach babies. She was wonderful!” Rebecca exclaimed, recounting the tracheostomy care Noah received from Elizabeth Goetsch, pediatric registered nurse III at Children's Hospital. “Nurse Liz spent time training us how to suction,” said Rebecca. “She’d say, ‘I’m going to Noah with teddy bearteach you the sterile way we do it in the Hospital.’ We must have gone through packages of gloves.” Rebecca spoke of how she and her husband and other family members practiced the tricky process of putting a clean hand inside a sterile glove without touching the outside of the glove with the other hand. “We’d finally do it and she’d say, ‘Oh, you just touched the table,’ so we’d have to start all over.”

Tracheostomy patients require regular suctioning to remove mucus and allow for easier breathing. The process involves gently inserting a catheter attached to a suction machine into the trach tube to extract mucus. The frequency of suctioning varies depending on the child’s health and environment. “On a good day we suction every one to two hours.” said Rebecca. “Bad days are every 10 minutes. Thankfully they’re few and far between.” 
 
Noah with teddy bear“It makes me feel so good to work with them,” said Goetsch, regarding her penchant for providing care to trach babies. “I think it’s because the babies are very needy, and I love to teach.”

“She was so great,” said Rebecca. “She would laugh and say, ‘Pretty soon you’re gonna be suctioning in your sleep,’ and she was right!”

Noah’s grandparents care for him three days a week while his parents are at work. They came to Goetsch’s informal lessons as well. “The training we got out at Children’s was excellent. It prepared us to take care of everything,” said Smith.

In addition to demonstrating the proper way to suction a tracheostomy, Goetsch also teaches daily care of the trach site. “It’s something you don’t learn overnight,” she said. “You really have to want to do it.”

Noah with teddy bear“She’s not hovering over us,” Rebecca said of Goetsch’s instruction. “She stayed back and let us stumble our way through, which really helped us when we took him home. I don’t remember being scared.”

“I have seen parents who say, ‘I cannot do this. I can’t take this baby home.’ But once you start working with them, then they’re OK,” said Goetsch. “It’s really fulfilling to me to do that.”

Rebecca loves Children’s Hospital for making the uncommon common. “Just being there made me feel much more comfortable.” She spoke of sitting in a waiting room alongside other children with a tracheostomy “just like Noah.” Away from the Hospital, unusual things like a total parenteral nutrition line and a “hidden eye” make people stare or ask questions. But when she and Noah come to Children’s for a visit they fit right in, even with an eyelid completely fused over an unformed eye. “They were so ‘That’s-who-he-is-so-that’s-OK,’” said Rebecca. “I feel normal here being around parents going through the same thing.”

Rebecca’s mom choked up in admiration of her daughter’s strength under the weight of such enormous challenges. “She has had such a tough road,” said Smith. “She works full time, and as a first-grade teacher she has to be up and happy and cheerful.” Smith believes God gave Noah the best set of parents on the planet. “Kc is a phenomenal father. I couldn’t have picked a better son-in-law,” said Smith. “Often families are torn apart, but the two of them are really a team. They work together.”

Noah reading children's book“The way these two have strengthened their faith and their marriage through this has been something to see,” said Brad Bell, directional leader at The Well Community Church. Rebecca and Kc have received tremendous support from Bell and Jerrod Rumley, Clovis campus pastor at The Well. When Kc brought Rebecca to Children’s the day after Noah was born, their pastors had already arrived.

“The opportunity to go and pray for that little guy was a privilege,” said Rumley. A story about Noah Jackson would not be complete without referencing his family’s strong Christian faith. “Kc is probably one of the most thoughtful people I know,” said Rumley. “He needs space to think things through. To see how he responds in this tragedy, and see how his faith has grown, it’s been powerful.”

“Kc is one of the most gifted artists I’ve ever seen,” said Bell. Kc works as a graphic artist for The Well. “And Rebecca is a very strong, very talented young woman,” he said.

Noah’s grandmother agrees. “She’s an amazing daughter – loving, compassionate, fun, helpful,” said Smith. “She’s been teaching since she was about 3. She used to teach her dolls, and then her brothers.” Rebecca’s gift for teaching has come in handy as she and her family learn sign language together. Noah’s hearing tests revealed encouraging news, but without the ability to speak, he needed another tool for communicating.

Noah must acquire a few other skills most 2-year-olds never need to be taught. “He’s very anxious about different textures,” said Dawn Aholu, pediatric occupational therapist II at Children’s Hospital. “Like marshmallows! You would think all kids would like touching them, but not Noah.” Aholu began working with Noah in late summer 2010 to desensitize him to various textures and to increase his tolerance for food.

Noah with a toyRebecca appreciates the patience Aholu demonstrates while coaxing Noah to eat. “She’s sweet, wonderful and kind,” said Rebecca. “She pushes him. He doesn’t like to be pushed but she’s methodical. She’ll say, ‘We’ll do it two more times,’ and they will.”

“I’m trying not to gain weight,” Aholu said with a smile. “I’m eating everything I’m trying to get him to eat.”

“We’re probably years away from him eating,” said Rebecca. Noah received a G-tube at 4 months of age and has not taken food by mouth since. “The OT says, ‘yes, he will eat’ and I’m thinking it will be years.”

“If I force the issue, he’ll never do it again, so I make it a game,” said Aholu. “We play a lot. We get out the balls and swings, and then we transition to sitting in a high chair to play with food. If he takes a lick or puts food in his mouth, he gets rewarded.”

Noah goes to the Fresno Rehabilitation Center once a week for occupational therapy with Aholu. “Coordination takes time to learn,” she said. “Once they learn they can spit food out they don’t like, it’s easier to get them to try things.”

Noah likes to hold crackers and Cheetos and will lick the salt from them, but not eat them. “He actually swallowed some applesauce once, but he hasn’t swallowed anything that needs chewing yet,” said Aholu. “He loves the car game. If the wheels go into the pea purée and he licks the wheels, he gets a reward.” 

Noah on Superbowl SundayEventually Noah will go to a speech therapist to learn how to breathe through his nose and mouth rather than his tracheostomy. But for now, Aholu incorporates a few little tricks into her occupational therapy sessions. “I’ll take a piece of colored tissue paper and tell him to watch how the breath makes it move. I’ll say, ‘We’re gonna blow five times and that’s all.’”

Eating and breathing may be difficult for Noah, but his mind is sharp. “He’s at or above cognitive developmental milestones,” said Rebecca. “He has known shapes and colors since 20 months. The doctors are very pleased with his cognitive development.” Noah is not only bright, he is also witty. “He’s funny and he understands humor. If he does something to make me laugh he’ll do it again.”
 
When asked to describe Noah’s personality, the Jacksons’ pastors responded with a low chuckle. “Let me tell you why we chuckled,” said Bell. “There’s something about this little guy who has so much adversity, handling surgery after surgery, and showing such durability. There’s a joy about him and a light. Where’d he get it from? Mom? Dad? The answer is a wonderful yes.”

“Noah makes you feel special when you’re around him,” said Rumley. “There’s just something about his personality that draws you in. There’s a spark in there, and I think it comes from Mama.”
 
“I’ve been so impressed in watching these young parents,” said Bell. “There are people who will claim a faith in God, and then there are people in tragedy that you look at them and say, ‘There’s something about them.’ This couple has modeled their faith in Christ. It’s real and it’s evident,” he said.

Noah’s occupational therapist has seen the evidence in the Jacksons’ parenting style. “He has two loving parents that have supported and nurtured him,” said Aholu. “Dad is just so involved. It’s always nice to see a man playing with his child – especially when they have special needs because they require more care.” 
 
Noah watching TV“It’s been an amazing adventure and I don’t say that flippantly,” said Smith. “It’s taught us so much about relying on each other.” The family has also relied on Children’s Hospital. “Noah has received excellent care,” said Smith. “If you have to be in a hospital Children’s is the one to be in.”

“I’ve been a pastor for a while and I’ve had the unfortunate privilege of visiting the Hospital on more occasions than I’d like, but watching the care has been amazing,” said Bell. “It’s a tribute to the visionary leadership and the incredible generosity of the community that we have a hospital like Children’s.”
 
With one less doctor to see and the bulk of Noah’s surgeries behind him, the family hopes they won’t have to be in a hospital – even one as wonderful as Children's Hospital Central California – as frequently in the future.

“He still has a lot of mountains to climb over,” said Dr. Gerardi. “You can’t just fix it. You have to manage it.” The devotion of Noah’s family and the expertise of his medical team at Children's have helped Noah manage his Fraser’s syndrome remarkably well. In many ways, he acts like any other 2-year-old.

“Right now we’re working on learning to jump,” said Rebecca. “He’s very proud of himself.” His family and friends – including the ones at Children’s Hospital – are very proud of Noah too.