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A Child With Hemophilia is Waiting

Medical Hemophilia Bulgaria China

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  Written by Sara P Evangelos on 05 Nov 2014

When his birth parents in China realized Michael had a chronic medical condition, they probably felt helpless and desperate. Perhaps they thought his disorder was untreatable, or they couldn’t obtain treatment. They may have assumed he wouldn’t live long, and hoped he could receive end-of-life care in a hospital or institution. 

One can only imagine what led to their difficult choice.  Michael was abandoned at age 2.

Michael’s medical condition? He has hemophilia. 

Now age 4, Michael is living at Yangzhou Orphanage in Jiangsu Province, on the eastern coast. The orphanage has an exclusive partnership with the California-based agency Across the World Adoptions, finding families for eligible children. Pam Thomas, China Program Director for the agency, first met Michael in May 2014. There in the orphanage, among a group of toddlers and preschoolers, Pam says
Michael stood out as “one of the healthiest, most robust, most playful, active, adorable little boys I have ever seen.” 

Then a caregiver told Pam about Michael’s hemophilia. And Pam immediately responded, “I think I can find a family for him.” The surprised caregiver turned to her colleagues, translating
Pam’s words. 

“They looked stunned,” recalls Pam. In the hemophilia adoption cases she has handled, “the orphanage staff were reluctant to put the children’s required adoption paperwork together, thinking that there
would be no interest from anyone to adopt these children.”

Why Adopt?
People adopt for different reasons. Most just want to be parents. But why adopt a child with a serious medical need like hemophilia?

For Jasmin D., the reason is humanitarian. “I see it as an act of service.” Jasmin is an electrical engineer, social worker, and single mother of Kiran, 8, adopted domestically; Adi, 7, adopted from China with severe hemophilia A; and Nanda, 5, adopted domestically. Jasmin also has a new foster daughter. “Through the adoption of Adi,” says Jasmin, “I realize that I have saved my son’s life. You can say it in a spiritual way, I serve God. You can say that I serve humanity. I know that my life has not been in vain. I have made a difference.”

For the Luckey family, the reason was a unique child. Shari, a speech pathologist, and Dave, an IT consultant, have three biological children: Jay, 20, Anya, 14, and Isabella, 14.

Jay has severe hemophilia B with inhibitors, and Anya is a symptomatic carrier of hemophilia B, just like her mom Shari. When they first learned about Luke, a child in China with severe hemophilia A, Shari says, “We were not considering adoption. We thought our family was complete with our three biological children.” But then, “We were so touched by the story of this little boy, that we felt led to make him a part of our family.”

So in 2010, the Luckey family adopted Luke at age 9 from Nanjing, China.

Not just a child with a special medical need, but an older child? Jasmin says that unfortunately, “Children over age 5 are not sought after.” So for her, “It was set in my heart to adopt an older boy. And a boy with a more significant medical condition—a child that was considered unadoptable.”

Why Adopt a Child Overseas?
For Jasmin, it’s about social justice, about the haves and havenots. “In the US, we have access to many resources. I can give to a child. I can provide medical care. I think that if one can, one must.”

She believes that ideally, “children should stay in their home countries, and be connected to their birth cultures.” 

But if the child has a disorder that is untreatable, or inadequately treated in the home country, adoption can be a lifesaving solution. As an international adoptive parent, Jasmin adds, “People will sometimes
ask, why do you not adopt the children right in our backyard, the foster children? I will say that’s a good argument, but international adoption of a child with hemophilia, for example, is a humanitarian act. My son would have died. No foster child [in the US] dies because of lack of medical care.” 

Bleeding disorder treatment is inadequate or nonexistent in many countries. Why? Factor is a prohibitively expensive drug. It’s near the bottom of the list of available treatments in developing nations, which also face infectious disease outbreaks such as tuberculosis, malaria, and cholera. Add to that natural disasters, political unrest, and sluggish economies. When governments decide on budgets and drug formularies, scarce healthcare dollars are spent to benefit the most people. Because hemophilia is rare, patients are left behind.

“What is possible here in the United States for children with hemophilia,” explains Pam, “is only a concept for children born in developing nations.” She notes that domestic adoption in the US “is rarely a life-or-death issue, but it is certainly that for so many children born abroad.” And that’s one reason parents choose overseas adoptions. Pam says, “When we adopt children who have lost everyone and everything, and who have medical needs we can meet, the bond is profound.”

Family: A Shared Experience
Bonding with a child whose medical need you understand. That was a goal for Sarah and Josh H. of Nebraska. Josh is a rancher and farmer, and Sarah, until recently a stay-at-home mom, telecommutes for a specialty pharmacy. The H. family have three children: Paisley is age 5. Lane, age 7, has severe hemophilia A with inhibitors. Christian, age 16, was adopted in 2006, and has special medical needs including
autism, epilepsy, and cerebral palsy. 

After Lane was born and then diagnosed with hemophilia, Sarah had genetic testing. “We chose not to have any more biological children because of my symptomatic hemophilia carrier status,” she explains, “but we weren’t done having kids. We knew that we would adopt someday, and that they would be special needs.” 

Sarah had received a newsletter about children waiting for adoption in Nebraska, and she began looking at international websites. On RainbowKids.com, parents can check boxes for special needs. When Sarah checked ‘hemophilia,’ she found 13-year-old Gabriel, in Eastern Europe. “Once we found that there were kids with hemophilia waiting to be adopted, we had our ‘Duh!’ moment,” laughs Sarah. The H. family decided to adopt Gabriel. 

From the medical records Sarah and Josh have seen so far, they know that Gabriel has severe hemophilia, and that he probably doesn’t have inhibitors. They’ve been told that he is living in an orphanage, and that he is receiving factor. At the time this article was published, the H. family members are anxiously awaiting the rest of Gabriel’s records, and hoping to maketheir first trip to Eastern Europe to meet him later this year. After the adoption process is complete, they’ll make a second trip to pick him up.

Overseas Medical Records: What to Believe?
How certain can you be about the validity of medical reports from overseas orphanages and hospitals? “The medical reports we receive from the CCCWA [China Center for Children’s Welfare and Adoption] vary in their reliability, as do reports from other countries,” explains Pam. “We need to depend on the local medical resources to correctly diagnose and document medical conditions for the children, and they may not employ the sophisticated techniques that US citizens are accustomed to.” Pam adds that parents can consult international adoption doctors in the US who specialize in
reviewing reports, photos, and videos, and helping to identify concerns in a child’s health report. 

“There is always risk in becoming a parent,” Pam stresses, “so adoptive parents are wise to put together a team that includes a good placing adoption agency, a good home study social worker, and one of the international adoption doctors to help them understand the medical aspects of a referral. Agencies can often use questions formulated by the international adoption doctors to request updates through their placing agency.” 

“When they tell you about the medical condition,” advises Jasmin, “be prepared that it could be more severe, or that there could be medical conditions you didn’t know about.” Jasmin was told that Adi had mild to moderate hemophilia, but when she arrived in China, “I took one look at him and I knew that he had severe hemophilia.” And this turned out to be true. “I found out later that Adi had been undertreated for hemophilia and received factor concentrate on only a few occasions.”

She explains, “The medical records I had gotten before I went to China were partial, indicating that Adi had a bleed about once a year. The full medical records, which I received while in China, indicated that
there was a bleeding incident about once a month.” 

By contrast, the medical reports that Shari and Dave Luckey received for their son, Luke, were accurate. Luke was living in an orphanage located next to a hospital in Nanjing. When he had a bleed, he was hospitalized and given cryoprecipitate. Shari says, “Our hematologist here was amazed that Luke had severe hemophilia and was in such great shape. He said they must have taken really good care of him and protected him.” 

Pam sums it up: “In the end, there is always a leap of faith required in becoming a parent.”

Insurance: The Good News
Insuring your child—biological or adopted—is crucial. Do your homework with your insurance company before beginning the adoption process. Pam reassures parents: “Families adopting abroad should
have no problem getting their children covered by their insurance. There is no more denial of coverage for pre-existing conditions, and children adopted by US citizens are covered from the date of their adoption.” 

Shari confirms this. “Luke was immediately added to our private insurance plan, and we also signed up for Michigan Children’s Special Health Care Services insurance. We had to provide information that proved we had adopted him, but it was very simple.”

As Sarah continues to navigate Gabriel’s adoption process, she wants to be absolutely sure. “We have verified—again, and again, and again—that as soon as the adoption is finalized, he will be good to go on our insurance just as he if he were born to us.” 

Jasmin and Adi had a smooth transition. “The minute the child is placed with you, whether it be a foster or an adoptive placement, insurance kicks in and the child is covered.” But, she stresses, “You definitely need good insurance.” Jasmin also got assistance through Patient Services Inc. (PSI). And her specialty pharmacy and local hemophilia association were great resources. “I had so much support, I was amazed. I would tell adoptive parents: Don’t be afraid of it. There is such a network in place, and a political lobby, and one can figure things out. Go for it!”

And most important, the pre-existing condition clause, which Jasmin calls “a horrific thing,” is gone. Its elimination, she believes, “will make all the difference for future hemophilia adoptions.”

Eligibility, Paperwork, Paperwork: The Adoption Process
“It seemed like the whole process was hurry-up-and-wait,” recalls Shari. “We would rush to get paperwork turned in, and jump through all the hoops, then would have to wait for everything to be processed and to begin the next step.” 

But she adds, “We worked with an amazing adoption agency that had so much experience with special needs China adoptions, that they walked us through the process and told us how long we should have to wait for each step. Our experience was very fast, with very few hurdles.” 

Pam gives the typical run-down for China adoptions: “Families must have a home study done in their home state by a Hague-accredited agency. They must undergo several hours of pre-adoption education classes, have meetings with a social worker, and gather documents that the Chinese government needs to review before approving the parents to adopt.”

What about eligibility requirements? Pam reports, “Those are more flexible than they have ever been. The CCCWA will accept couples who are at least 30 years old, up to age 55. They will accept single women up to 50. It’s possible to obtain waivers for age issues, financial requirements, and a variety of other issues, on a case-by-case basis.”

However, before Jasmin found Adi, she was rejected based on age when trying to adopt from India. “I applied to adopt a special needs child with a serious blood disorder, and I was turned down. At the time I applied, I was 50, and their age limit was 50. So I did meet their requirement, but the Indian adoption authorities still rejected my application on the grounds that I’m ‘too old.’” 

When an older child has a serious medical need, it may seem crazy to set age limits for adoptive parents, but age restrictions are country specific. Some countries, such as China, may negotiate age waivers. Others, such as India and Korea, may be more rigid about age requirements and won’t negotiate. Pam advises any parent who requests an age waiver to “have a formal guardianship plan in place and good resources to ensure that a child would be cared for until maturity.”

Sarah outlines the relatively smooth steps so far in adopting Gabriel: “We started exploring in November, and in January sent in all of our waiting child paperwork. We received our unofficial referral for Gabriel in February, and then had our dossier [of required documents] translated and submitted by July.” Sarah notes, “The biggest surprise has been the number of times we have to be fingerprinted! It’s amazing that we have done it three times already and we have another set to go when we return from Eastern Europe.”

But, she adds, “When we get frustrated with paperwork and technicalities, we just think of his sweet dimpled face waiting to meet his family! Just like pregnancy or childbirth, it’s all worth it in the end.”

What Will It Cost?
That’s one of the first questions parents should ask when considering an adoption, either domestic or overseas. For China adoptions today, notes Pam, “The average cost is about $35,000. This includes an agency fee in the US, home study costs, document preparation cost, USCIS [US Citizenship and Immigration Services] fees, in-country adoption fees, orphanage donation required by the Chinese government, and travel and living costs in China for about two weeks.”

Sarah recalls that when she and Josh began researching overseas adoption, “the cost was shocking.” But now they know what to expect, and so far, no more financial surprises have popped up.

Pam explains that parents are now protected by the Hague Convention. “Agencies placing from Hague countries are mandated to provide prospective parents with a written list of costs and fees that they can expect to spend, both in the US and in the Hague signatory country. Families report these costs to the USCIS during their child’s visa process, and the USCIS evaluates the fees to be sure they are appropriate.”

The Hague Convention protects families from illegal adoption practices. Pam adds that in non-Hague countries, and in independent adoptions, “there may be additional risk, but families should not hesitate to ask for full fee disclosure, no matter which service provider they choose.”

How to raise funds for an overseas adoption?
“One of our families sold all their collectables on eBay to raise money,” Pam reports. “Some go to their church or social group for support. Others apply to organizations that offer grants. There are low-cost or no-cost adoption loans. There is also a $13,000 federal tax credit for adoptive families.” Pam recommends consulting an accountant about the adoption tax credit. 

“I was never so-called financially ready when I adopted any of my kids,” admits Jasmin. “With my oldest son, who was adopted domestically, I had savings, and then I put several fees on a credit card.”
Would she advise other adoptive parents to do the same? “For one year? Absolutely! Apply for interest-free credit cards for six months or one year.” 

When adopting her daughter Nanda, Jasmin got an interest-free loan from the local Jewish community. “As a Jewish single female,” she explains, “I had practically no options. If you’re a Christian married couple, there are many grant organizations available to assist. But if you’re of the ‘wrong’ religion and the ‘wrong’ marital status, then things are a lot harder, but still doable.”

For Adi’s adoption, Jasmin worked through her adoption agency to negotiate with the overseas orphanage director. China required an orphanage donation, so Jasmin negotiated a waiver based on the fact that Adi was hard to place because of his hemophilia. She did her research first: “I found out that in the past, another single mom was interested in adopting Adi. She didn’t go through with it, but in her case a waiver was given. So I said, if we were able to do it then, we can do it now.” Jasmin also got a grant through A Child Waits Foundation, an organization that offers grants for adopting children in orphanages abroad, and children with special needs. “So together with the adoption tax credit that I received later,” explains Jasmin, “Adi’s adoption was paid for. It was a huge blessing for me.” 

When the Luckeys were adopting Luke, Laurie Kelley emailed all her contacts, and within 48 hours had raised $17,000. “The hemophilia community often will rally to help a family in need,” says Laurie.

Setbacks, Stress, Travel, Stress, Hurdles, Stress
There are as many adoption stories as there are families. Some are full of stress and setbacks, some are smooth. Always be prepared for delays and surprises.

Shari relates, “We began the process in March 2009. We had not had a home study, so we had to go through the whole process. Our agency said we completed our home study faster than anyone else ever had! We left to pick up Luke in January 2010, so just about ten months from start to finish. Had we already had a home study completed, it probably would have been even quicker.”

Sarah describes “a mess of hurdles” in her adoption process: “Because we had a current foster daughter, we had almost a two-month delay waiting for the initial approval to release her information into our home study.” From there, the delays continued. “The most frustrating has been unnecessary delays from the state because of our foster care placement. 

Waiting for emails and letters to arrive has been nearly we are definitely learning about patience.” But, she adds, “As hard as it is for us waiting on each step, it’s harder for us to know he is sitting in an orphanage, oblivious to the fact that there is a family who wants him and can’t wait to bring him home!”

Overseas adoption usually means traveling to meet your child, sometimes to a developing country where standards and services vary from those in the US. For some parents, traveling is smooth; for others, it’s stressful. If you’re adopting an older child, Jasmin emphasizes, “Learn the basics of the language of your child because it helps in the initial bonding process.” Before she left for China to pick up Adi, Jasmin learned some Chinese. “I spoke like a one-yearold!” But even a little Chinese helped, because “it took three months before Adi was able to communicate pretty well.” 

When Shari and Dave traveled to China, “It was recommended that we go to Hong Kong initially and spend a day or two getting acclimated to the time change, because when we arrived in Nanjing, we received Luke the very next morning. This was excellent advice. Hong Kong is easy to navigate and a fun place to visit.” 

By contrast, while in China, Jasmin had to take Adi to a local children’s hospital for a tetanus shot after a fall. “I thought, a children’s hospital, it’s going to be nice and rosy, like in the US. But it looked just like a prison, overcrowded and understaffed.” She couldn’t wait to get Adi home. Jasmin had doubts when she arrived overseas. “Can I really do it? Is it the right thing? Will I go bankrupt? Will he die? You go through the worst, and just want your old life back.” 

The unknown can be scary, especially when you’re traveling thousands of miles to meet your new child. But as Sarah advises other adoptive parents, “Keep your eye on the goal.” 

Eyes on the Goal
Adoption is about so much more than shared experience, humanitarianism, or meeting a medical need. It’s about the wonder—and challenges—of creating a family. 

“It has been so rewarding to see Luke blossom,” says Shari, “from a child who was tentative and afraid to be physically active—because he had little access to medication—to a child just like every other boy his age, playing and being active, because he is on prophylaxis and hasn’t had a bleed in over three years.”

Jasmin believes, “Hemophilia adoption is probably one of the most rewarding things you can ever do.” She recalls, “Adi was so happy when I came to take him. When we boarded the airplane, he was beaming, and when we landed and went to American immigration at the airport, he just soaked it all up.” Adi has adapted well to his life in America, fitting in with his school mates, learning English quickly, and also learning Hebrew, the Davidsons’ language at home. 

Sarah is ready for the challenges of adopting an older child overseas. “Gabriel doesn’t know us, and as a normally functioning teenager, it will be a transition from orphanage to family life, and especially to another country and culture.” But she’s excited about the future. “The biggest reward will be adding to our family and having another child to love. Our children will have another sibling to grow up with and learn from.” 

Ready to Explore Adopting A Child With Hemophilia?  Spend some time on RainbowKids.com exploring Adoption Requirements, Country Options, Adoption Agencies, and our Waiting Child Area

This article was originally printed in LA Kelley Communications PEN publication and has been generously shared with our readers. LA Kelley Communications is an amazing Hemophilia Education and Humanitarian organization.  

 




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