Adoption Ban Denies Disabled Kids a New Start: US Families

WASHINGTON, December 29 (By Maria Young for RIA Novosti) – On Friday, the same day Russian President Vladimir Putin signed a new law banning American families from adopting Russian children, nine-year-old Yana Herzog, adopted by an American family in 2005, had the latest in a string of surgeries to correct a birth defect that is often fixed for American children within hours of birth.

“We’re not sure if she would have had the surgery, had she stayed in the orphanage,” said Ann Herzog of Massachusetts, who along with her husband Bill adopted Yana from Russia. “We were told all of her caregivers were hoping she would be adopted so that she could have the whole medical team intervention she would need.”

Yana was born with a urological birth defect called bladder exstrophy, a condition where her bladder was outside her body. 

She was 20-months-old when she was adopted and two-years-old by the time she had her first surgery.

“She does great now. She travels to play soccer with her team, she dances, she’s very active,” said Ann Herzog.

“She’s got a beautiful personality. Her smile just lights up the room,” she added. “She really shines now.”

But in part because of the delay in treatment, Yana uses a catheter to urinate, every four hours or so.

Her doctor hopes medical science will catch up, and allow her a more permanent solution that doesn’t involve a catheter in the next five to 10 years.

“Had she stayed in Russia, I would be concerned that she would have had chronic kidney infections, been incontinent, and her pelvis had to be reconstructed, so she may have had difficulty in walking,” said Dr. John Gearhart, Director of Pediatric Urology at the Johns Hopkins Medical Center in Baltimore, in an interview with RIA Novosti.

Gearhart has treated Yana and hundreds of other young patients adopted from Russia, including her three-year-old brother William, who has the same birth defect and is scheduled for his first surgery in the spring.

“I have two groups of patients I’ve treated from Russia,” he said. “One are the children like the Herzogs who have major birth defects our Russian colleagues can’t take care of, and the second are those who have been treated for major defects but surgery has not gone well.”

He has also treated the children of Russian officials, Gearhart said

“The treatment is available in Russia, but it’s spotty,” he said. “They may do one of these surgeries every year or two.”

Long before his young Russian patients came to America, they were well-cared for in orphanages and baby homes, Gearhart said.

The problem in Russia is not a lack of compassion but a lack of medical access, he added.

“I think the Russians love their children. Their treatment has been very good. They have good nutrition. But they would have limited access to such specialized care, a pediatric anesthesiologist who can monitor pain, a physical therapist, a team of nurses,” he said.

It’s that lack of medical care that is most alarming for many in the adoption community, who say special needs children – those who are older, are HIV-positive, have Down syndrome, or other mental and physical disabilities – are unlikely to be adopted.

The adoption ban was signed by Putin on Friday in response to the Magnitsky Act, an American law signed by US President Barack Obama this month which calls for US travel and financial sanctions against Russian citizens deemed by the American government to have violated human rights.

The Magnitsky Act angered Russian lawmakers, who passed their own human rights legislation, including the adoption ban, named for Dima Yakovlev (Chase Harrison), a Russian toddler who died of heatstroke in 2008 after his American adoptive father left him in an overheated car for hours.

“We were really praying for wisdom, for compassion, for leadership, and we haven’t gotten than from either side,” said Andrea Roberts, co-founder of Reece’s Rainbow, a non-profit fundraising and advocacy organization which supports parents adopting special needs children from all over the world, including Russia.

“Kids with Down syndrome often have heart conditions, gastro-intestinal conditions, and (in Russia) they just aren’t treated,” she told RIA Novosti. “This is a death sentence for many of these children.”

Roberts says her organization has 70 families in the process of adopting special needs children from Russia, including six with Down syndrome and one with HIV whose adoptive parents are scheduled for a final trip to Russia in January, even though the adoption ban is supposed to begin Jan. 1.

“No Russian families will adopt them. They are left in baby houses and then transferred to adult mental institutions at the age of four,” Roberts wrote in a letter to the US State Department begging for help this week.  

“We are pleading with President Putin and the legislators in Russian Parliament. HAVE MERCY on these children,” she wrote.” At the very least allow these families who are already committed to complete these adoptions, for the sake of your own children!”

Putin said he intends to sign a decree to provide support to orphans and children in Russia with serious health conditions.

One hopeful American couple who spoke with RIA Novosti asked not to be identified for fear of jeopardizing their chances of adoption.

They are in the process of adopting a little girl with a cleft lip and palate, a treatable birth defect.

“Over here we start surgery at two weeks old,” the adoptive mother said. Whether children in Russian orphanages get surgery or not, “It would depend on the institution and whether they have the funds to do it, but she has not had surgery yet.”

They are hoping to bring her home in January, a process they say has been expedited because the girl’s condition is considered a medical emergency.

“The only thing we hear is, ‘if you’re in the process, you’re okay,’” she said. “We have been told we’ll be hearing about a court date in January, and we’ll be travelling January.”

It’s not clear whether they and other prospective parents who are nearing the end of the adoption process will be allowed to bring the children they’ve met and bonded with to new homes and a new start complete with medical treatment.

“We are further concerned about statements that adoptions already underway may be stopped and hope that the Russian government would allow those children who have already met and bonded with their future parents to finish the necessary legal procedures so that they can join their families,” said Patrick Ventrell, Acting Deputy Spokesman for the US State Department, in a statement Friday.

Ann Herzog, who adopted Yana in 2005, traveled earlier this year to the same orphanage she adopted Yana from to adopt three-year-old William.

The facility, she said, was much improved with a full renovation that included a new playground, and it seemed clear that the caregivers loved the children and were doing their best in a difficult circumstance.

At three, William is still too young to understand the political ramifications of an inter-country adoption dispute.

But Herzog told Yana about the Russian ban on adoptions using terms simple enough for a nine-year-old to understand.

“I just told her the two leaders of these countries had a dispute and they’re trying to work it out, but for now, this is what’s happened,” Herzog said.

Yana seemed to understand, she said.

“She told me, ‘I think it’s sad for the children. They’ll be all alone in the orphanage.’” 

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