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Learning about Lymphedema

From time to time, we will have a child in one of our programs who has a diagnosis that is unfamiliar to most people. We have found this to be the case for one of the boys in our Changzhi foster care program, eleven-year-old Yago. Due to the severity of his diagnosis, and the need for him to receive medical care, LWB volunteer and pediatrician Jenny LaBhan was able to help shed some light on why adoption is Yago’s only hope.

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The Adoption Advocacy team recently asked for help in learning about Yago’s medical condition so that they can best advocate for him. As a pediatrician and parent, I am always touched to be able to use my medical expertise in an effort to help children.

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Yago has a disorder called “lymphedema” which is progressive (i.e., gets worse over time). A typically functioning lymph node system helps drain fluid from your head, neck, arms, & legs back into your blood stream. This draining fluid passes through lymph nodes which also help your immune system look for bacteria, viruses, etc. Lymphedema is a disorder in which your lymph node system is either malformed or damaged, causing blockage of the normal fluid drainage. In Yago’s case, there is a problem with the lymph node system in his right leg that causes fluid back-up. This excess fluid causes swelling and further damage to surrounding tissues in his leg in which the tissues eventually become hardened, or fibrotic.

Lymphedema-leg

As Yago’s lymphedema continues to progress over time, the biggest risks to him are loss of function of his leg (as it gets more swollen/enlarged) and infection (as the skin gets broken-down & damaged). If untreated, this could eventually lead to amputation of his limb or worse due to the development of a severe infection.

Unfortunately, there is no cure currently for lymphedema. However, there is hope. There are treatments that improve the symptoms & help prevent complications. These treatments might include:

  • Good skin care – trying to keep the skin clean & unbroken to prevent infections
  • Exercise – contractions of the surrounding muscles help fluid to be pushed upward out of his leg
  • Wrapping/bandaging – compression of his leg will help push the fluid upward
  • Massage techniques – helps massage the lymph nodes & push fluid out of his leg
  • Pneumatic compression – a machine that gently compresses the leg to help move fluid out
  • Laser treatments – helps break down hardened tissues
  • Surgery (still being developed) – may transplant “good” lymph nodes into the area or remove hardened tissues

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With a combination of these possible treatments, Yago would have the best chance for improving the function of his leg. He would also have the best chance to prevent further damage, to reverse some of the fibrosis already present, and to prevent life-threatening infections.

There is quite a bit of research going on in the US about lymphedema, so there are certified lymphedema therapists and a whole system of treatment called complete decongestive therapy (CDT) for these patients. We can see from recent pictures that Yago’s leg is getting large/hardened and his skin is breaking down, so I am afraid he is only going to get worse unless he is able to receive proper medical care.

~Jenny LaBahn is the Qingyang Education Assistant Coordinator for Love Without Boundaries.

Unfortunately, last year Yago had to drop out of school because of the frequent medical care needed for his leg.  From what we have been told, Yago very much enjoyed school and never hesitated to help the younger children there. Below you can see him reading a book to a neighbor girl.

Yagoreading2

He reads and studies on his own in his foster home, but our foster care manager tells us that he misses the formal structure of school and is very worried that he is falling behind. He often asks if he will be able to return to school and his friends there.  Yago is said to be a strong, motivated student who learns easily and is well aware of the value of an education.

Yago3 1.15 (1)

Please contact our Adoption Advocacy Team at [email protected] if you have questions about Yago. Yago is the recipient of an Adoption Assistance Grant of $4,500 and needs and deserves the best medical care possible for his lymphedema — sooner rather than later. We hope to see him have the opportunity to continue to learn and grow with a family supporting his educational and medical needs.

Love Without Boundaries proudly advocates for adoption but is not an adoption agency. We invite you to contact [email protected] with questions about a child we have featured and encourage you to contact your adoption agency for more information about China’s Waiting Child Program.

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