/

No regrets for mothers of children with Down syndrome

But new, simple prenatal test raises alarm bells for these moms

by Masami Ito

Staff Writer

On a chilly afternoon in early spring, Mayumi Mitogawa, 52, and her 14-year-old son, Yutaka, sat together on a bench, getting ready to have their picture taken. He jokingly made a face and tried to push her out of the way, showing a hint of the shyness common to teens about being seen with their mom.

“He just loves to make people laugh,” Mitogawa said, smiling affectionately at her son — who was born with trisomy 21, which causes Down syndrome — as he fooled around mimicking the motions of famous Japanese comedians. “I know that some people refer to children with Down syndrome as angels, but I don’t see my son like that. He is just human.”

Down syndrome is caused by an extra copy of chromosome 21. Symptoms include specific physical characteristics and intellectual disability, and often potential complications of the heart and other internal organs. It is estimated that 1 out of 1,000 babies are born with trisomy 21, and various medical studies show that the older the mother is, the higher the risk.

Mitogawa was 38 when she gave birth to Yutaka, her third child. Her first daughter, Kyoko, now 29, suffered neonatal asphyxia at birth and has cerebral palsy. She is unable to move or speak and requires total assistance. Her 21-year-old second daughter, Eri, was the only one of the three who was not born with any physical disabilities.

Looking back, Mitogawa said she suspected something might be wrong with her son after looking at a sonogram when she was eight months pregnant but only found out for sure that he had Down syndrome after giving birth because she did not take an amniocentesis — an invasive procedure that involves the insertion of a long needle into the uterus that can cause a miscarriage.

Mitogawa, a board member of the Japan Down Syndrome Society (JDSS), had miscarried several times before becoming pregnant with Yutaka. She said abortion was never an option for her.

“After giving birth twice, I had thought about the meaning of life and birth, and I was ready to accept any sort of life,” she said. “The possibility of giving up the baby never occurred to me. I was leaving it up to nature.”

Mothers of children with Down syndrome say raising them is generally not all that different from nondisabled children, although it can vary somewhat depending on certain circumstances, including whether one lives in an urban or rural setting and whether the child has other complications, such as a heart defect.

Nursing notebooks are distributed by municipalities to the mentally disabled that enable them to receive financial aid, discounts on public transportation and priority in public housing.

Mitogawa said many mothers, including herself, have part-time or full-time jobs as well. Their major headache is the same as any other working mother — the lack of public day care centers.

“Japan has a cultural trend to view people with disabilities as ‘different’ — to think that it is those with disabilities who need public services, while the nonhandicapped go without,” said JDSS Chairman Kunio Tamai, who has a son with Down syndrome. “But the reality is that no one can live completely on his or her own without some sort of public service.”

The JDSS has issued statements expressing concern over a new prenatal test that needs only a blood sample from an expectant mother to detect three types of trisomy, including Down syndrome, with a high accuracy rate.

The test is considered controversial because its simplicity makes it much more accessible than other prenatal tests, including amniocentesis, which in turn might lead to a rise in abortions and trigger discrimination and misunderstanding toward those people born with Down syndrome.

“I don’t want this test to become a sort of trend that everyone follows without giving it much thought, only to regret it later when they get the test results,” Mitogawa said. “I want people to give it careful consideration, squarely facing all of the issues before making the choice that they think is right for themselves.”

Noriko Otake, whose 2-year-old daughter, Mariko, has Down syndrome, expressed skepticism about the wisdom of introducing the new test. Otake gave birth at age 42 and, like Mitogawa, refused to undergo a prenatal diagnosis.

“Parents and children are two separate beings and I don’t think one has the right to determine the life of the other,” Otake said. “With the advances in medicine, I worry that the equal value of each and every life will be robbed if parents can choose which babies can be brought to life and which ones can’t.”

In Otake’s case, she said her hospital repeatedly stressed her age and gave her information on the prenatal screening tests she could take to check to see if her baby had any defects. It was a crowded hospital, and she recalls being completely overwhelmed by the speed with which her doctor just rattled off the details and she was left confused.

“I had no idea what was going on and I felt like they were treating me like a sinner for trying to give birth at this age,” Otake said. “My heart was racing as I sat there wondering if something horrible was going to happen if I gave birth.”

Mariko makes visits twice a week to a center for disabled children where Otake has made friends with mothers of children with various disabilities, ranging from Down syndrome and cerebral palsy to developmental disorders.

Otake said it’s not easy to raise a special-needs child, but she is surrounded by warm support from her husband and friends. She says she has had little negative interaction with others over her daughter.

“Mariko is the treasure of my life. I am so happy that this adorable little girl loves me so much, and I hope that she will grow up being happy,” Otake said.

  • ume

    These women are inspirational – Its so nice to hear positive stories about those with down syndrome. Women should know that, there are real options to them if they have a child with Down syndrome, or any other abnormality.