Training Wheels: Learning to Live with Severe Hemophilia

June 30, 2014 by nohandsbutours Adopting hemophilia, advocating, blood conditions, boys, Children Who Wait, Family Stories, hemophilia 0 Comments

One year ago I was in China meeting my little boy. When I saw his precious picture on the waiting child list in the summer of 2012, I gasped and immediately requested his file. The blurb next to his picture said that he had hemophilia. I didn’t really know much about this condition, and in true researcher style, I set out to learn everything I could. I discovered that there were two federally funded Hemophilia Treatment Centers (HTCs) near my home (see here for a Directory of HTCs in the United States). So, I called both of them and said, “What would you say to someone who is thinking about adopting a little boy with hemophilia? His paperwork says he has 2% of Factor VIII.” And, BOTH HTCs said, “Oh, he’s a moderate! They’re easy! Do it!” No hesitation. Not even a bit.

I kept reading, and I learned that hemophilia treatment has come such a long way in a short time. Without treatment, these kids are lucky to live to be 24, but with proper treatment, they live to a ripe, old age. Treatment products are safe, and in-home care allows children with hemophilia to lead relatively typical lives. Although 2% of anything didn’t really sound very “moderate” to me, those responses gave me the confidence to move forward. What did I learn about moderate hemophilia? Unlike children with severe hemophilia, moderates didn’t really experience spontaneous bleeds, they got treatment on demand when needed to treat a trauma-related bleed (like a twisted ankle), they didn’t need the kind of regular (2x, 3x, or more per week) prophylactic IV infusions that children with severe hemophilia needed. I could do that. Only children with severe hemophilia needed regular, never-ending prophylaxis. Worries about spontaneous brain bleeds weren’t a concern for a “moderate.” So, I moved forward.

He came home, and the HTC’s initial tests showed that he actually had 6% of Factor VIII, he had mild hemophilia (anything over 5% is mild). He’s a mild! Whew! What a relief! He could be a real boy, and I didn’t have to worry! He ran, he played, and he had his first knee bleed – a hot, swollen painful joint that was clearly familiar to my boy. He knew just how to move, how to crawl in such a way that his excruciatingly painful knee never hit the ground. (And, now I had insight into why he might have had those calluses on the palms of his hands when I met him.) He knew that he needed to ice it, and this precious, just-turned-3-year-old never even whimpered about needing to rest. He just busied himself with puzzles and crayons and books on the couch….with a good dose of Netflix thrown in for good measure (Barney and Daniel Tiger are family friends now).

HappyBoy2ChineseNewYear14

Our hematologist noted that his owie knees were not new – this precious boy had clearly experienced knee bleeds before. He said that those were the knees of a child with hemophilia. The x-rays showed no permanent damage. And, we started “temporary” prophylaxis twice per week to help strengthen those poor, battered little knees. (You know, prophylaxis, that thing I wasn’t sure we could do all the time.) An amazing home health nurse entered our lives. She was a gift who understood my son (even as he was learning English) and helped him to take control of his treatment. She had the patience of a saint as he performed the whole infusion procedure on his little bear at every visit. (Thank goodness our HTC nurse gifted us with Bear!) She tolerated all the videos and children’s songs he chose to view when it was his turn. Once he finished bear’s turn, he held out his arm and said it was his turn. That was the amazing part. So brave. He just knew. Three years without adequate treatment will provide that wisdom, it seems. He knew what this treatment did for him, and he still does.

You see, 6 months after we got him home, and our HTCs lab equipment was calibrated, we learned that his Factor VIII levels are actually less than 0.5%. Yes, you read that correctly. This child basically makes no Factor VIII of his own! They rechecked the results. And, they even sent samples to a reference lab to be sure. Yes, my boy has severe hemophilia. And you know what, we kept him alive for 6 months. He runs, he plays, and he gets factor twice per week. Our dear, “Nurse-ah” (who has now become just “Nurse” as English pronunciation has emerged) is still with us. She has migrated to the couch recently, as that is where he is choosing to have his infusions. And, he is choosing to have his infusions. Bear rarely gets any at all – he just lays on the factor tray (covered in old band-aid goo) waiting to be needed. And, my precious boy rarely gets knee or ankle bleeds. On the rare occasion that he does, he tells me, “Knee ow! Like China. No walking. China sad. Home happy. Walking! Factor in…..knee all better!” What wisdom. What a lesson for me.

RunninginPuddlescrop

What if. What if his paperwork had said, “< 0.5% Factor VIII”? Would he be here? Severe hemophilia had scared me. I doubted my ability to parent a child whose life could be in danger because of the severity of his condition. But, God had a different plan. He knew I could do it, but he knew I needed training wheels. “He’s a moderate.” Then, “No, he’s actually a mild!” And, “They’re easy!” Hearing those words gave me the confidence to let my son live as a real boy. To run, dance, jump, play, fall, get up, and do it all over again. And, he did all those things, under my watch, for 6 months, as a child with severe hemophilia. Right under my nose, and I never even knew it. So, yes, I have learned such a valuable lesson. I can do this. And, I can’t imagine life without him here. He just fits into our family. When he met his big sister, his Jie Jie (Mandarin for big sister), it was as though they had always known each other. My mother says she can’t even remember him not being here. He just belongs. He tells me that he is so happy that he has a big family and a home. He knows he is loved. I am blessed every day to have this wonderful boy in my life. And, I’m so thankful for those training wheels that showed me that I can.

Kelly&son2

~Guest post by Kelly

Waiting Children with Hemophilia

Crosby

Crosby was found in 2005 at approximately one year old. Soon after coming into orphanage care he was diagnosed with hemophilia, with a deficiency in the number 8 factor. At that time Crosby began receiving monthly blood transfusions, which decreased to once every few months and are no longer necessary. He joined a foster family in 2006 and adjusted well. His physical and cognitive development progressed appropriately. Crosby returned to live at the orphanage in 2010 to attend elementary school. Today he is in the 3rd grade. He excels academically. Crosby is descried as smart and artistic, strong-willed, helpful and shy with strangers. Overall, his medical condition is controlled with clotting factors that are taken twice per week and he is doing very well. Crosby is currently designated to Holt International, contact them for more information and to review his file.

Yi+Fu+Shi+photo

Michael

Michael is an adorable, healthy appearing 3 year old boy who has been diagnosed with hemophilia. He is receiving medication to prevent bleeds. His development is reported to be normal, and on target for his age. Michael’s language skills are considered superior. He is very fluent, and has very good receptive language as well. Michael is appropriately shy with strangers, but once he feels comfortable, he is outgoing and interactive. He appears well nourished, clean and cared for. We are told that he is very close with his nannies and affectionate. He lives with a small group of similar aged children and he seems to be part of the group, and gets along very well with the other children. He is playful and interested in coloring. He likes our stickers, and puts one on his forehead to be funny. He has good focus, and an easy smile. He has had no other illnesses and has never been hospitalized. He makes excellent eye contact, and seems clever, curious, and appropriate. He is well behaved and well like by the staff. Michael is designated to ATWA, contact them for more information or to review his file.

thumbnail-24-aspx

Chen

Chen is diagnosed with hemophilia and microcytic hypochromic anemia. He was born November of 2007. He is listed as special focus with Lifeline Children’s Services. Chen can express his needs. He obeys and is polite. Chen needs a forever family to call his own. Please contact Lifeline for more information or to look at his file.

1

For more information on beginning the adoption journey, contact the Advocacy Team.



Leave a Reply