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Mom of disabled child offers support

Mutual aid between parents a source of strength

by Hisanobu Wakabayashi

Kyodo

The woman came to the Kitakyushu Rehabilitation Center for Children with Disabilities in Fukuoka Prefecture in January to see a mother raising a child born with the same chromosomal abnormality as her own daughter.

“I understand. You must have a lot of concerns,” the 44-year-old woman, from the city of Yamaguchi, said to the mother.

“Please don’t cry,” she told the mother, who reminded her of herself three years earlier when she gave birth to her daughter, Ayumiko.

The woman from Yamaguchi, who asked that she and her husband not be identified by name, became pregnant with Ayumiko at the age of 40 in 2009.

“I would have given up on having another baby if I hadn’t gotten pregnant by 40, as I already had three miscarriages by then,” she said.

When the woman was five months pregnant, usually considered to be a stable period, she told her son, who was 4, that he would have a brother or sister in five months.

But she later regretted telling him that after an amniotic fluid test found the unborn child had a chromosomal abnormality known as trisomy 13, which often causes severe intellectual and physical disabilities.

The doctor had said, “Don’t expect the baby to live to be 1,” explaining that its heart could stop at birth.

The woman signed an agreement stating her family would not wish for the baby to be given life-prolonging treatment.

The news ruined the happiness she felt after becoming pregnant. She said she cried in her heart while managing to smile in front of her colleagues, who remained in the dark about the diagnosis.

In an attempt to provide encouragement, her 46-year-old husband said they should still make preparations to welcome their second child.

He was the one who named the baby Ayumiko using the kanji representing “walk,” hoping she could at least live until taking her first steps.

“At the time, I was as devastated as she was, but I tried to pretend I was all right,” the husband said.

He was encouraged by an acquaintance raising a child with disabilities who told him “not to think of the future but of what you can do in the moment.”

Ayumiko was born May 13, 2010, a month premature.

The mother was afraid the baby’s first day in the world would be her last. When she heard a strong cry at birth, she believed God had given her a present but that it might be the last.

The child’s condition, however, was much better than expected and surprised the doctor. The baby was placed in a newborn intensive care unit soon after her mother briefly slept next to her.

But the woman’s concern never ended, as it remained uncertain whether the little girl’s condition would deteriorate, or whether she would be able to celebrate her first birthday.

The baby remained in the hospital for about a year, until May 2011, and the mother was braced for the worst the whole time.

“It was like I carried a chunk of ice named terror, struggled and slowly faced reality day by day,” she said.

But something changed when she got to know a mother raising a boy who had been born with trisomy 13.

“I had always felt like I was slowly climbing a mountain of darkness that I never thought I could cross,” she said. “But then, although the mountain was still there, it seemed the darkness had gone.”

The other mother who came to see Ayumiko’s mom at the hospital was introduced to her by 64-year-old Yasuo Takeda, a dentist at the Kitakyushu rehabilitation center. The Yamaguchi woman had contacted Takeda about Ayumiko, who was born with a cleft lip and palate.

Takeda has supported families of children with birth defects for nearly 30 years.

“There are certain things doctors can never treat,” Takeda said, stressing the importance of mutual support among parents of children with disabilities.

Ayumiko’s mom learned from the other mother that her son for the most part lives just like “normal” children.

“If I had not met such people, I would have avoided all possible risks and stayed at home all day,” she said.

It did not mean all her sorrow and anger went away. She often asked herself questions such as “Why did this happen to my child?”

But the more joyful experiences she was able to have with Ayumiko — walks in the park and swimming at the beach — the more positive the woman became.

She decided to share her own experiences and feelings with other parents and met in January with the woman who had a child born with trisomy 13.

Ayumiko’s mother sometimes wonders if she would have had the courage to continue with her pregnancy if she had been told early on about the chromosomal abnormality.

But she said, “I get to see the smiling face of Ayumiko every day and I want to live with that happiness.”