By JIRO TSUTSUI/ Staff Writer
October 3, 2019 at 17:40 JST
KOKA, Shiga Prefecture--Shortly after he turned 3, Taichi Mikazuki stunned his parents when he asked, "Why me?"
The young boy had been born with a birth defect and a serious respiratory problem and had to breathe with the help of a plastic breathing tube, called a cannula, inserted into his throat.
“Why am I the only one wearing a bulb (which is at the end of the cannula)?” he asked.
He wanted to know why his twin sister, or his parents, didn't have to live with a bulb hanging around their necks.
His mother, Tomoko Mikazuki, 36, couldn’t find the words to answer her son. The only thing she could do at the moment was to say to herself, “I’m sorry.”
With the help of his supportive and positive parents and nurses, Taichi has come to grips with his difficult circumstances and found an answer to the question--and a good reason to live.
Now 5, the boy is proud of his work titled, “Tai-chan’s cannula and Daddy’s eyeglasses.” The illustrated book is A3-size and comprises 14 pages, including the cover.
The opening line goes like this:
“Daddy!! Why is Taichi wearing this?”
Taichi, wearing a red cap, points his finger at the blue bulb of the cannula seen around his neck.
On the following page, Taichi’s father, Yuki, 36, responds, “Daddy is wearing eyeglasses, you see? I’m wearing these so that I can see Taichi and Minami (Taichi’s twin sister) better!!”
Then the father, illustrated wearing blue-rimmed glasses, tells his inquisitive son: “Just like Daddy’s eyeglasses, Taichi is wearing the cannula so that you can breathe better.”
Taichi visits his favorite nurses Banban and Chakkie to ask more about his disease. He learns that he may not need to live with the cannula once he grows up and his condition improves.
"I will give my best with the cannula until my respiratory tract grows!!! Because Daddy is wearing eyeglasses, too!!"
Comforted by their explanation and encouraged by his family, a smiling Taichi, wearing a yellow cap and his cannula around the neck, goes to a nursery school that he loves at the end of the story.
Shortly after birth, Taichi was diagnosed with congenital esophageal atresia, a rare birth defect that results in being born without part of the esophagus. As a result, he couldn’t drink milk as a baby.
Taichi underwent surgery. He was about to be released from the hospital when he temporarily stopped breathing. He was diagnosed with tracheomalacia, which makes the trachea collapse when exhaling. Taichi had difficulty breathing, which put his life in danger.
The doctor suggested to his parents that a tracheotomy be performed on Taichi and a cannula inserted into his throat.
“He was a newborn baby, yet he had to go through surgery many times,” Yuki recalled of the difficult decision. “I cried so hard in the car on my way home that I could barely drive.”
The parents pinned their hopes on the doctor’s words: If the operation was successful and Taichi’s postoperative recovery went well, they would be able to care for their son at home.
In the beginning, Taichi was required to be on an artificial respirator 24 hours a day. His parents had to remove sputum every day to keep the cannula clean and clear the airway. They did that several times a day and countless times when Taichi felt sick.
Eventually, Taichi became well enough to breathe with the cannula just during the day.
After Taichi asked his parents why he had to live with the medical device, they wanted to thoroughly explain his condition to him.
MAKING THE BOOK
His parents looked to the Shiga Medical Center for Children in Moriyama, Shiga Prefecture, where Taichi has been treated, for support and advice.
Two nurses, Keiko Banba, 42, and Kozue Chaki, 35, and biomedical equipment technician Susumu Ono, 40, discussed the best way to tell Taichi that he had made good progress and what he has is a “curable illness.”
Then they came up with the best prop: Yuki’s glasses.
The cannula is a necessary item for Taichi to go about his daily life, and he will not need it once his illness is cured.
They thought that making an illustrated book would work the best and hoped it became “something that (Taichi) would want to read when he grows up and reflects back on his childhood.”
Tomoko, who used to be a nursery teacher, provided instruction for the illustrations. Taichi, together with Minami, drew the illustrations of himself, family members, his doctor and the two nurses--nicknamed Banban and Chakkie in the story--using crayons and colored pencils.
“Drawing with crayons was difficult,” Taichi said. “I was wondering if my parents would be happy (to see the book).”
It took about a month to complete. The illustrated book was done in April and was later unveiled at the nursery Taichi attends.
BOY LEADS NORMAL LIFE
Today, Taichi can even run. He lives life in much the same way as his friends do, except that he uses an artificial respirator at night along with the cannula.
Taichi said he wants to become a firefighter when he grows up, apparently influenced by his father, who is a paramedic.
“Through this illustrated book, I hope to spread the understanding of the illness that Taichi has lived with,” Yuki said. “It would be wonderful if other parents and children who suffer from similar diseases receive the message.”
Yuki and Tomoko vividly remember the doctor’s words that have encouraged them the most along the difficult journey: “Taichi-kun stopped breathing three times. He could have died. His condition was that grave. Your son has such a strong will to live.”
When asked, "What does the cannula mean to you, Taichi-kun?" the boy paused for a while, then said, “It is to live.”
His parents' faces light up, in surprise and amazement.
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