Picture this: In a small dusty village, north of Shanghai, China, a baby is crying. Milk runs out of her mouth, out of her nose. Her mother’s dress is damp with it, this milk that her child can’t drink. The baby’s mouth is open wide, showing a large gap from the roof of her pink mouth, right up to the base of her little nose. It is called a cleft palate. It is the problem.
This tired mother has been desperately trying to feed her child for the past ten days. The baby is skin and bone. The baby is hungry. And this mother, so, so tired.
In a small dusty village, north of Shanghai, China, a mother wraps her baby in a faded green blanket. She kisses her child’s fingers and toes. She tries to feed her one last time.
Milk on the blanket, milk on the baby, milk on the mother.
The starving little body is placed in a basket, a bottle of milk beside her.
In a small dusty village, north of Shanghai, China, a mother is leaving her baby on the street, beside an overflowing bin and a rusty bicycle.
She kisses her forehead, then turns and walks quickly away.
There are about 700, 000 abandoned or orphaned children in China.
And at least 90 per cent of those children have a disability.
The top reason for abandonment?
Cleft palate syndrome. Curable. Not at all life threatening. And in certain parts of China, free to fix.
If you can get the help you need.
Orphanages in Shanghai are inundated with children with disabilities, ranging from cleft palate syndrome to club feet/hands, heart disease and brain disorders. It’s a huge problem, but no-one seems to be talking about it.
Most of the orphans come from provinces outside of Shanghai.
Essential Learning Group clinic director Fiona Yapp says: “The theme seems to be that families are needing to abandon their children in order for them to get the medical services they need. They would rather keep their child, but then they’d have to cover medical costs, and that’s not achievable for them.”
The Essential Learning Group is an organisation offering support in both Shanghai and Guangzhou, providing an alternative to mainstream education for children with special needs, and a broad range of services including behaviour therapy, social work and counselling.
Yapp says a lack of resources and the large gap between the middle class and poorer communities means they can only really provide help to expats and local families who are not impoverished.
“Our program is fee paying,” she says. “So we tend to only have local families who are not impoverished. There’s a lack of support for the more rural and local people with disabilities in China, and their families. There’s a gap.”
Fudan University student and vice president of volunteer group Eyes for You, Violet Sunjiayue, shares this view.
“There are two factors related to this problem of abandoning,” she says. “One is the large gap between the rich and the poor in the cities and the rural areas. In the rural areas their economic development is slow, so disabled people cannot be provided with a lot of help… The second factor is a disabled child cannot provide money, and requires a lot of money from the family. It’s unfair to the rest of the able children, so the parents choose to abandon them.”
So it seems there is a range of disability support on offer, but only if you are in the right social position to accept it.
Most of the charity groups concerned with disability are non-government organisations, meaning they are non-for-profit and run separately to and without support from the government. But in China you need a license to form a non-government organisation, and Yapp says this license is difficult to get.
“It took just over four years for us to get a license to be an non government organisation… Charity law in China is very complicated. It’s almost impossible to get that NGO status here.”
Lupin Foster Home is another non-government organisation, offering before and after care for abandoned or orphaned children with disabilities.
The home lies in a neat and peaceful suburb, about an hour out of Shanghai. It is painted white, and there are children’s pictures taped to the windows. Most of the children at the home come from central China, namely He Nan province.
“These families cannot afford the medical cost of supporting their child,” says Lupin Foster Home executive director Mary Ren. “They need able-bodied children who can work in the fields or in the city to help with their family’s income.”
The founder of the home, Mary Zhang, has a child hanging off each hip. A large mat holds many more, crawling on their hands and knees and bouncing in bouncers.
“He Nan province is a very poor area with a huge population. People are undereducated and hospitals and treatments are not as good as in Shanghai,” she says.
I sit down with the children and one particular baby catches my attention.
He is lying on his back, away from the others. And while the other infants laugh and cry and ooh and ahh, this little fellow is completely silent. He has wide, intelligent eyes.
“He’s recovering from heart surgery,” says Zhang, bouncing one of the children on her knee. This child has a swollen head, and has just had brain surgery to get rid of excess fluids.
Mary Ren says the Chinese government has introduced a new policy so families can get up to 80 to 90 per cent of the medical fee cut from some surgeries if they are undertaken in rural areas. But many diseases cannot be cured in these areas because of the lack of technology.
“In Shanghai medical costs may only be covered by 30 to 40 per cent. Many families can’t afford this,” she says.
So Mary Zhang and Mary Ren, along with three other women, set up Lupin Foster Home, using their own money to get the program running, which is now supported entirely by donations.
It is a world away from the state orphanages I read about but was unable to enter. No staff from these state run orphanages or organisations were available for interview.
“At Lupin Foster Home we take care of them like mothers. We give them everything they need,” says Mary Ren.
Once the children have recovered from surgery, the staff at LFH try to find them a new family.
“We help the kids find a foster or adoptive family, because we want them to stay in Shanghai and have better living conditions than the places they have come from,” says Ren.
But it’s not as simple as just finding the children a home.
In Shanghai the identification system makes it very difficult for adopted children from other provinces to go to school in Shanghai. Children with Shanghainese ID have priority for the local kindergartens and schools.
“The orphan’s ID belongs to their home province, and they will have lower priority. They are migrant children, and it takes at least five years to migrate,” says Zhang.
This means adopted children may have to go to a private school, if the local schools don’t have space for them. This is expensive, and many local families will not be able to afford the cost.
“You’d have to be fairly rich in Shanghai to adopt a child,” says Zhang.
“Seventy-five per cent of adoptive families are foreign.”
In a quiet leafy street, about an hour out of Shanghai, a baby girl is being dropped at Lupin Foster Home. The baby’s mouth is open wide, showing a large gap from the roof of her pink mouth, right up to the base of her little nose. It is called a cleft palate. In the city, this is easy to fix.
One Less Orphan foundation founder, Naomi Kerwin, says cleft palate is the top reason for child abandonment.
“Fifty to 90 per cent of the children born with cleft palate in China are abandoned,” she says.
One Less Orphan foundation attempts to provide families with the resources they need to care for their disabled or unwell child themselves.
“We try to direct resources that are being given to orphans to families, so that families are not abandoning their children,” Kerwin says, rummaging in her handbag.
She pulls out what appears to be a regular baby’s bottle, only it has a longer teat.
“It’s hard for you to feed with cleft palate, because you can’t create the suction that’s needed to eat,” she says. “You need a bottle like this, that works like an eyedropper.
“Our latest program, The Lucky Bunny Cleft Kit, will help families get through the first few difficult months of caring for a baby with CLP and helping arrange free surgery.”“I can’t imagine there being another way to go, other than preventing child abandonment in the first place,” says Kerwin.
But even One Less Orphan has trouble connecting with the families who need help.
“There is more and more support, but how can people in rural areas find the people who can help them?” asks Lupin Foster Home’s Mary Zhang.
Right now, it’s an issue without a clear solution, and those trying to help don’t seem in full agreement about the best way forward.
Fiona Yapp from Essential Learning Group has a different perspective.
“It is easy to view the families who abandon their child as wrong, but actually sometimes they are the families acting with the most love,” she says.
“Children with disabilities are far more likely to be abused and neglected than other children.
Those that aren’t abandoned may be suffering abuse and neglect. Many children with disabilities are killed.”
She interlaces her fingers tightly and swallows.
“That’s the group of children I am very concerned about.”
And there are many, many more reasons families abandon disabled or unwell children, each as unique as the situation itself.
“There is still a big stigma around disability,” says Mary Zhang.
In rural areas, traditional thinkers look down on people with disabilities, believing they are a sign of bad luck or karma. Families with an impaired child may even be shunned from the community.
“They will not be treated as equals, so the parents choose to abandon their children,” says Mary Ren.
In some cases, fatally ill children are abandoned so their death doesn’t occur in the home. Elder family members with traditional views believe the death of a child is bad luck for the whole household.
“So in very traditional areas, the families, especially the grandparents, will not allow the grandchildren to die at home,” says Zhang.
“Chinese families like healthy babies. This is their first priority,” she says.
“We do our best, to provide a loving, warm place for them, but the love of a parent is missing.”
In a quiet, leafy street, in the garden of Lupin Foster Home, a baby is being pushed on a swing. There is a deep gap from her pink mouth, right to the base of her little nose. It is called a cleft palate. She’ll be having surgery to fix it soon.