"I want to walk with you someday" December 22, 11:15

I want my child to be born healthy and grow up smoothly.

It's a feeling that all parents have in common.

But if my child is told that he may not be able to walk...

"Cerebral palsy" develops in newborn babies at a rate of 1 to 2 in 1000 births.

Although there is a system to provide financial support because treatment and rehabilitation costs a lot of money, there are families who are not covered by the system and cannot receive support.

(Takamatsu Broadcasting Station Reporter Hiroko Suzuki)

unforgettable day

In January 2020, a boy was born at a hospital in Kagawa Prefecture.

Her mother, Anri Fukushima, had an emergency caesarean section when her water broke at 29 weeks' gestation.

She weighs 1411 grams.

It was a very low birth weight baby.

She was taken away in an incubator immediately after birth, so Anri could neither see her nor hold her.

Her doctor told her she was in danger for 72 hours after birth, and she was devastated.

Still, she managed to overcome the crisis with her small body, and her parents named her "Aiku" because of her cute appearance.

She is doing well as she is in intensive care in the NICU and is able to drink her breast milk.

The two envisioned a happy life ahead.

However, the day of discharge arrived two months later.

The two were stunned by the words the doctor told them.

Doctor

: “I have brain damage, but I don’t know the cause or when it happened.”

When the father, Tatsuhan, asked, "What will happen if there is damage?" the doctor said, "You may not be able to walk in the future."

Aiku-kun's disease name is "PVL = periventricular leukomalacia".

It was a form of cerebral palsy.

At first, he couldn't believe it.

She doesn't look any different than any other baby, and even felt that "Maybe Aihisa can walk too."

However, she gradually faces a harsh reality.

She can't turn over, sit, or touch, which she should be able to do.

Things that “cannot be done” became more and more obvious.

I apply for the compensation system, but...

Cerebral palsy is a condition in which the brain is damaged for some reason during pregnancy and after childbirth, resulting in paralysis of motor functions.

There is no cure, and regular treatment and rehabilitation are essential to keep the muscles from tightening.

The two frantically researched how to get their bodies to move.

I learned that regenerative medicine and state-of-the-art rehabilitation have improved the symptoms and made it possible to walk.

Under such circumstances, what caught the eye of the parents was the "obstetric medical compensation system" to financially support children with severe cerebral palsy and their families.

Until the age of 20, you can receive compensation of up to 30 million yen in total.

I applied after Aiku-kun reached his 1st birthday.

Mother Anri Fukushima:

“Around that time, I had found a hospital in Osaka that specialized in acupuncture treatment.

Six months later, the two of them, who had high hopes for the program, received the ruthless result of not being eligible for compensation.

Because of Aiku-kun's heartbeat condition at the time of her birth, it is said that she "does not meet the criteria for compensation."

Father Tatsunori:

“If there was anything I could do for Aiku, I thought I would do something that would cost a lot of money. The same impact made my head go blank."

Anri's Mother:

"I felt sorry for Aiku. While I know it's an incurable disease, it doesn't make sense if I don't treat her from a young age, but I can't do it now. I'm sorry. "

Careful daily care

His parents were disappointed when they learned that he would not be able to receive compensation, but Aihisa is growing little by little.

At first, I couldn't speak, but now I can say "Ah" and "Uh".

I've learned that I show a lot of smiles, and that my tone of voice changes when I'm happy or when I'm sad.

When the toy was brought closer, it began to reach out with both hands instead of only one hand.

"I want to do whatever I can, even if it's on my own

. "

I also studied walking rehabilitation on my own.

I can't take my eyes off Aiku-kun, who tries to walk while holding on to a walker while also taking care of his eldest son in the second grade and doing housework.

Still, the two are still uneasy.

She still wants to work on advanced rehabilitation as much as possible, but since Anri cannot work due to Aiku's constant care, the family has no choice but to rely solely on Tatsunori's income.

Rehabilitation that is not covered by insurance is not readily available.

Originally, a special chair with wheels to be remade as a child grows is a second-hand one.

Since the size does not match, I use a towel to fill the gap.

At the time of eating, Aiku-kun gets upset if he sits down, so I have to hold him in his arms.

Since Aihisa-kun can't swallow solid food, he especially eats adult meals in the form of paste.

It takes over an hour, including preparation.

We would like to use a welfare vehicle that can be used with a special chair for transportation to hospitals and rehabilitation, but it costs several million yen, so we cannot purchase it.

Now, every time I hold Aiku-kun, who weighs 13 kilograms, and put him in the car.

It is estimated that a child with cerebral palsy will cost from 25 million yen to 70 million yen at most to reach adulthood, compared to a healthy child (according to the Association of Parents Considering Obstetric Medical Compensation System).

Furthermore, if compensation is received under the system, an investigation into the cause will be conducted, but that is not possible either.

The days are frustrating for parents.

Anri's mother

"I can't wait for Aihisa to grow, so if there is rehabilitation or treatment that is effective, even if it's a month, a week, or a day, I'd like her to receive it. It's frustrating every single day that I couldn't do it." Even though it is my own child, and I gave birth to him, I am sorry that I do not know the cause.

Can't be saved retroactively

It is difficult to determine whether the cause of cerebral palsy is due to some prenatal situation or due to medical treatment during childbirth.

In order to protect obstetricians who are exposed to litigation risks, the maternity medical care compensation system was created in response to actual medical accidents during childbirth. there is

However, it was believed that babies born with short gestational weeks were more likely to be caused by "immaturity," so certain standards were established.

If the birth weight is 1,400 grams or more and after the 32nd week of pregnancy, the compensation will be uniform, and if the child is born between the 28th and 31st weeks of pregnancy, it will be individually reviewed based on the data at the time of birth.

Aiku-kun was also individually judged.

However, no arrhythmia was detected by the heart rate monitor, and the body condition one minute after birth did not correspond to severe asphyxia, so it was judged that the criteria were not met.

She enlisted the help of the hospital and applied again, but her petition was rejected.

And while she was undergoing this examination, there was a story between the two.

It is said that the scope of compensation will be expanded from this year.

"Individual examination" was abolished from children born this year, and it was revised so that those who are 28 weeks or more pregnant are eligible for compensation.

The Japan Council for Quality Health Care (hereinafter referred to as the Agency), which operates the system, describes the reason as follows.

``The individual test used for preterm infants between 28 and 31 weeks' gestation cannot determine the presence or absence of cerebral palsy onset associated with septation.

Individual review is medically inconsistent due to advances in perinatal medicine.”

It turned out that individual screening was not medically justified.

However, it was also concluded that children who were excluded from individual screening in the past would not be compensated retroactively.

Aihisa, who was born at 29 weeks in 2020, is also excluded.

Mr. Tatsunori's father:

"If we admit that it was medically unreasonable, then we might have been targeted as well. I don't understand why we can't help."

Mother Anri

``What's the difference between the child born on December 31st last year and the child born on January 1st this year? Beyond sadness, I feel angry.''

Despite the expanded coverage, it is a double affliction for parents.

bailout movement

There are about 570 children across the country who have been excluded from the target like Aihisa.

In June of last year, the parents established the Parents' Association to Consider the Obstetrics Medical Compensation System.

The focus was on the surplus money of the system.

The amount not used for compensation under the system will be returned to the management side as surplus money, but the amount will exceed 60 billion yen as of November this year.

Parents' Association believes that this surplus can be used to help children who are not eligible.

The Parents' Association has submitted a request for relief to the government and organization.

The issue was also raised in Parliament.

However, the government showed reluctance.

Prime Minister Kishida

: "I am aware that it is difficult to provide relief under the current system in this management organization.

"

Why is salvation so difficult?

Under this system, 12,000 yen will be paid to the organization as a premium from the "lump-sum allowance for childbirth and childcare," which is paid to expectant and nursing mothers by health insurance associations and other organizations.

Using the premiums as insurance premiums, the Agency concludes contracts with private insurance companies.

If you are compensated, it is a mechanism that will be paid by a private insurance company.

Since it is operated based on a "covenant (= contract)" with expectant and nursing mothers, retroactively compensating a child for whom a decision has already been made would void the contract.

On the other hand, there are also deep-rooted voices that "they should be rescued."

However, the agency, which is entrusted with the operation by the national government, has expressed a sense of crisis that retroactive compensation will hinder the operation of the system.

Japan Council for Quality Health Care

: "Considering that future surveys and research may accelerate the gestational cycle covered by compensation, it is necessary to have sufficient surplus funds. Also, I have not applied for the system. Since there are also children, if only children who were not eligible for individual screening were to be rescued, it would create inequality."

In addition, medical personnel involved in the system may ask, "Why are only children with cerebral palsy in obstetrics covered?" We should take time to discuss it." The organization said, "We believe that some kind of relief is necessary, but the government should think of another framework for relief."

An official of the bipartisan parliamentary group said, "We will need to seek relief from a different perspective than before."

From the perspective of prompt compensation, the idea of ​​a temporary benefit is also emerging.

Just how to solve the problem of fairness with other diseases and disabilities, and financial resources.

There are behind-the-scenes contacts between the parties involved, but no satisfying solution is yet in sight.

How compensation should be

Anri still feels sorry for Aiku-kun.

Because of her desire to "do whatever she can", she is raising her voice for financial support. I feel that

Even so, at the end of November in Takamatsu City, when he signed a petition, he was told, "It's not your fault, so it's okay," and he felt a little less burdened.

Anri's mother:

"Some people understand me like this. Don't give up."

Mr. Tatsunori's father:

"Even those who said they didn't know about the system understood it and signed it. The fact that so many people are agreeing with us means that many people think that the system is strange." I think it's gone."

Interview postscript

The difficulty of the life of the Fukushima family, whom I interviewed, was beyond my imagination.

Aihisa-kun, who can't move his body freely, is choked with phlegm and can't sleep well at night.

Since she is also a child with cerebral palsy, I strongly believe that some kind of support is necessary to improve this situation.

On the other hand, as she interviewed the organization, she understood her claim that she could not be retroactively rescued.

Finding a satisfactory solution is difficult.

Instead of giving up, I earnestly hope that the people concerned will share their wisdom and come up with a way to provide support.

Takamatsu Broadcasting Station Reporter

Hiroko Suzuki

Joined the

station in 2017 and is in charge of prefectural government.