Adopting a Child with Hemophilia |
by Sara Prisland Evangelos |
One April day in 2000, Kathy and Tom Kuklish were in their garage, unpacking boxes after their retirement from the Army. Their son, Thomas Pat, has hemophilia. Three of Kathy's four brothers were also born with hemophilia, and two have since died. "We found an old PEN article," recalls Kathy, "on international adoption of children with hemophilia.* After prayer and soul-searching, we e-mailed Laurie Kelley to ask if she knew of any children with hemophilia available to adopt." On May 7, 2000, Laurie responded. “Unbelievably, an adoption agency has called wondering if there are any U.S. families looking to adopt an adorable Korean baby with hemophilia. He is ready to go!” Realizing that life was about to change dramatically, but believing that this was meant to be, Kathy e-mailed Tom, who replied, “I don’t know what we’re getting into, but I will support you, and we’ll make it work.” The Kuklish family lives in an Alabama suburb of Pensacola, Florida. Laurie put Kathy and Tom in touch with Americans for International Aid and Adoption (AIAA) in Troy, Michigan. They learned from AIAA that a 21-month-old boy with hemophilia (born Dong Joon Lee) was in foster care in Seoul, South Korea, awaiting adoption. The Kuklish family saw photos of the baby on the Internet, and communicated with AIAA mainly via e-mail prior to the adoption. “He is really an e-mail baby!” laughs Kathy. Michael Paul Kuklish was 28 months
old when he was welcomed from Korea by his new family, three days before
Christmas, 2000. Michael Paul (now age three) joined his new siblings
Thomas Pat (age 11), Mary Louise (age 13), and Kathleen Elizabeth (age
nine).PEN asked Kathy
and Tom to talk about the adoption, and describe how the family has adjusted
to its newest member. |
PEN: Why did you choose to adopt a child with hemophilia? |
Kathy: While we have our three biological children, we were advancing in age-and we have been touched by the hemophilia community. To us, hemophilia was not a show stopper. Hemophilia is really no more of a challenge than dyslexia or poor eyesight. It's no more limiting than any other challenge a child today faces. |
PEN: Did you discuss adoption with any hemophilia specialists beforehand? |
Tom: No. We get our comprehensive care from the hemophilia treatment center at Vanderbilt University Haemostasis and Thrombosis Clinic in Nashville, Tennessee-an eight-hour drive. So we didn't consult with anyone. We were comfortable enough raising a child with hemophilia. It's really not much different, having one child with hemophilia, or two; although there are some differences in physiology, bleeding patterns, and in the way Thomas Pat and Michael Paul react to pain. |
PEN: Did you have any concerns or fears about the adoption process? |
Tom: The length of the process! We wondered if it would ever really happen. We felt we were just stabbing in the dark. But once we decided that Michael Paul was the child we wanted, if we hadn't gotten him, I don't think we would have pursued adoption any further. |
PEN: You felt he was the child for you? |
Tom: Yes, it was intuitive. Kathy: As we went through the process, it became obvious to us that he was the intended child for our family. Michael Paul has the same kind of hemophilia as my brothers and our son [factor VIII severe]. When we looked at his pictures, we felt that this is the child God wants us to have. |
PEN: What happened when Michael Paul was diagnosed in Korea? |
Tom: He was in a foster home, and was diagnosed at seven months. Shortly after the diagnosis, he was taken by his foster parents back to the orphanage in Seoul. Hemophilia is a daunting disorder in a baby and toddler! There was a lot of concern, so I think they pretty much kept him in the crib. At about 21 months, when we first learned of him, he was bruising so much that the agency permitted him out only when he was with his special volunteer, one-on-one. He was later placed with another foster family until just before he flew to America. Kathy: Our adoption was delayed significantly by misplacement of INS [Immigration and Naturalization Service] paperwork. As we understand it, Michael Paul was virtually forced to stay in his crib during those weeks that paperwork was misplaced. That is a terrible waste of a toddler's life. Intentions were good, and I'm sure the people at INS worked as hard as the people at the adoption agency and in the foster home and orphanage, but that was a very harsh fate. |
PEN: Did you receive sufficient medical information from Korea? Any surprises once Michael Paul arrived? |
Tom: It was pretty well on target. We received a short videotape of him, and complete medical and personal history. We had a translated doctor's report, which we felt was very accurate. We had statements from social workers describing his visible physical condition: he had bruises, and was infused once a month. Kathy: When we received his medical papers, we sent them to Vanderbilt. The nurses who helped diagnose Thomas Pat ten years ago said, 'Are you sure you know what you're doing?' We said, 'It's going to work. God intends us to have this child.' At one point, medical records indicated that Michael Paul might have an inhibitor, so we faxed the paperwork to Vanderbilt. Those people were so good-they reviewed the information, and suggested some questions we should ask. As it turned out, no inhibitor has been detected in Michael Paul. |
PEN: Any problems with insurance related to Michael Paul's hemophilia? |
Kathy: We struggled to 'break the code' with medical insurance with DEERS (the Defense Enrollment Eligibility and Reporting System for the armed forces), since we are both retired Army and receive our medical care at Pensacola Naval Hospital. We were in limbo: we didn't finalize the adoption in Korea, since Alabama required a six months' stay before we could finalize. The term 'legal guardian' became a concern to the Navy. But after several months of wrangling back and forth, it was finally recognized that Michael Paul was in the military eligibility system. It was a tough challenge with the pre-existing condition, but Tom accomplished the impossible by convincing the Navy to authorize him medical coverage hours prior to driving to New Orleans to meet the plane from Korea. Even then, we were told, 'You can't have him on your high tier of medical care because there's a three-month waiting period. You don't have his paperwork done at the right time of the month, so you have to wait for the next quarter of the calendar year.' Our supplemental insurance would not recognize Michael Paul until the adoption was finalized; neither would Tom's medical reimbursement plan. We were blessed that nothing serious happened during that waiting period, and that we are nine miles away from Pensacola Naval Air Station Medical Center. The military doctors deserve praise for their ability to help us. Michael Paul has very special guardian angels-his health has been excellent. |
PEN: What was it like to meet Michael Paul at the airport? |
Kathy: It was a humbling experience to stand in the New Orleans International Airport, and see him come to us with nothing but a child's lost face and one set of clothes. Michael Paul turned to Tom in the airport, looked up to him, held out his arms and said 'Apa, Apa' ['dad']. He was obviously out of his element, but he had a commanding presence, and he went instinctively to Tom. That has never changed. |
PEN: If you hadn't adopted him, what do you believe life would have been like for Michael Paul? |
Tom: I don't think anybody else would have adopted him. I think his chances would have been very slim. Kathy: He was already stigmatized as an orphan. To have that against him socially, and then to have a chronic condition and continually be treated with human product-he would have had too many things against him to develop the way he has the opportunity to develop here in America. |
PEN: How have your other children adjusted to their new brother? |
Tom: I hear stories about adoption, about adjustment periods-but it has been minimal, even with hemophilia. It's been very positive for all of them. To be frank, there's a little jealousy because he's the baby, but they're all very protective of him. They have fully accepted him as a sibling, and that was quite amazing to me. Yes, we're helping him, but our family is also getting something out of it. In the Army, we had the opportunity to travel around the world, and although we've told our children about people in other countries, there's a lack of appreciation for what we have. When they saw Michael Paul come to our family, it became real for them. He was a child who had nothing. Kathy: Our older daughter looks at Michael Paul and says, 'Mom, I love this kid! How could they ever have let him go?' You don't pick what you're going to get when you have biological children. Children have no choice when they get a new brother or sister. But we all fell in love with Michael Paul the first time we saw his picture. One year after his arrival, Michael Paul is doing well in his new family. "He finds it interesting to see his older brother do his own infusions," Kathy notes, "and Thomas Pat is a big help with Michael Paul, helping him get his infusion done." Any regrets? "Every life, every child is a gift," says Kathy. "They all have their own challenges. As I look at him, my regret is that his birth mother, whoever she is and wherever she is, doesn't know what a blessing she has brought into this world, to our family, to everyone. Michael Paul has a special way with people, a special smile. He is a godsend, and he touches people's lives. He is a blessing." * The article "Adopting a Child with Hemophilia" appeared in PEN, May 1997. If you are interested in adopting a child with hemophilia, contact us and we'll see if we can help. Sara Prisland Evangelos is a free lance writer, editor and poet. She and her husband have a 12-year-old daughter, and a seven-year-old son who was adopted from South Korea. |
