No regrets for parents of girl born disabled

No regrets for parents of girl born disabled

"Even if she is born, I don't know how long she will live," a doctor told Taichi Kishimoto, 30, and his wife Mirei, 36, of Tokyo, when Mirei was in her 36th week of pregnancy.

Amniocentesis found their baby had a condition called trisomy 18. The baby was delivered via Caesarean section.

A patient with this disorder has an extra 18th chromosome and is prone to congenital heart defects and delayed development throughout the body.

The tiny girl was born weighing only 1,789 grams and in a state of apparent death. Even before crying, however, she smiled with her eyes closed. Hoping the girl would encourage people around her to smile with cheerful hearts, the couple named her Misaki, using kanji for "heart" and "bloom."

After enduring surgery to fix a heart problem, she left the hospital at 8 months old. She was hospitalized many times afterward, but now she is 3 and in good health. She smiles when her parents look into her eyes, stroke her head or speak to her.

When Misaki was 1 year old, Mirei became pregnant with twins. The attending physician recommended prenatal tests, but she did not take them.

"I never felt it was difficult to live with Misaki because she has trisomy 18," Mirei said, holding the healthy twin girls in her arms.

The lives of children with trisomy 18 are expected to be short, but advances in treatment are extending their life expectancies. Twice a week, Misaki visits a daycare centre for children with disabilities and diseases.

The couple hopes the day will come when both healthy children and children in need of medical attention can grow up together at the same child care centre.

Trisomy 18 is one disorder targeted by a new battery of prenatal tests that began in 2013. Unlike preimplantation tests, these tests diagnose chromsomal abnormalities by testing a pregnant woman's blood. The vast majority of women whose babies tested positive for trisomy 18 decided to abort.

Preimplantation screenings set to begin next fiscal year of fertilized eggs for in vitro fertilization will aim to identify trisomy 18 and other chromosomal abnormalities. Eggs with such abnormalities will be discarded.

"Given that the new prenatal tests, which will result in abortions, have been approved, it would be strange if preimplantation screenings, which will reduce the burden on pregnant women, were not," said one doctor who specializes in fertility treatments.

However, according to Meiji University Prof. Azumi Tsuge, a bioethics expert, laws and guidelines on preimplantation testing in other countries tend to be stricter than those for prenatal testing, which will result in abortions.

"There are underlying concerns about the spread of screening fertilized eggs," Tsuge said.

"I have problems with the idea of humans having a hand in selecting who lives," Taichi said, stroking Misaki's head. "Misaki teaches us to cherish every single day. We are proud of Misaki, and she makes us smile."Speech

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