Tehina’s Walking Wish For Life Changing Surgery

Tehina Kaonohi Devera is my beautiful daughter. Tehina’s dream is to be able to walk more easily like everyone else — without discomfort, without stares. To be able to keep up with her friends, cousins, and especially her little sister. She would love to be able to put her socks and shoes on without a struggle, help with chores around our house (believe it or not), and ultimately feel no pain in her legs, feet, and most recently her back and hips. Like any other child she deserves her chance at having the best quality of life possible, and, for the first time in her life, we have been given hope that this dream could actually become a reality with a life-changing surgery.

Tehina is and has been a fighter since gestation (the time between conception and birth) as I was diagnosed at nine weeks with Twin to Twin Transfusion Syndrome (TTTS). TTTS is a rare pregnancy condition affecting identical twins or other multiples (in my case they were identical twin girls). TTTS occurs in pregnancies where twins share one placenta and a network of blood vessels that supply oxygen and nutrients essential for development. Sometimes the vessel connections within the placenta are not evenly dispensed and there is an imbalance in the blood exchange between the twins. One twin — the donor twin (Tehina) — gives away more blood than it receives, consequently running the risk of malnourishment and organ failure. The recipient twin (Tehoku, our heavenly angel) receives too much blood and is susceptible to overwork of the heart and other cardiac complications.

When told I had TTTS, I was also informed that there is a likelihood that both, one, or none of my girls would have a disability due to this syndrome and was asked if I still wanted to go through with my pregnancy. Without hesitation I said yes, got on a plane the next week, and headed to San Diego to try and save both my daughters by having a laser surgery done. After the surgery was performed, I had an ultrasound done to check on both my girls and they were doing great. But the next morning, while doing another ultrasound, my doctor could only find one heartbeat and that was Tehina’s, the "donor twin." There was no explanation as to why or how Tehina survived because usually the recipient twin survives and not the donor, so she is truly our precious, miracle child.

The remarkable blessing that is Tehina came into the world at 36 weeks. By the time she reached six months, after missing certain milestones (sitting up and crawling), she had an MRI done on her brain and was diagnosed with Cerebral Palsy Spastic Diplegia. This is a neurological condition that permanently affects muscle control and coordination. Affected people like Tehina have increased muscle tone which leads to spasticity (stiff or tight muscles and exaggerated reflexes) in the legs making walking awkward and difficult. Her legs pull inward, and she walks with a scissor-like gait. She is unable to lock her knees, drags mostly her left foot because it's much more tight than her right foot, and is up on her toes all the time. She cannot walk long distances without a lot of discomfort and finds simple things like standing, sitting without support, pulling her socks on and tying her shoelaces, very difficult. She trips and falls often and needs to be careful on stairs as she has very poor balance and isn’t always able to get her foot up the stairs.

Socially, her condition has made her very shy and self-conscious. It has been very tough for her and for us as a family, especially as she has watched her little sister, cousins, friends, and strangers enjoy a normal life. Dancing hula, hiking, and playing sports are a few of the things she yearns to do. She has had to wear splints, night braces, had her legs put in casts for weeks at a time, had Botox injections many times to temporarily reduce the spasticity in her leg muscles, and undergoes continuous physical therapy just to keep the stiffness from getting worse.

Tehina is now nine years old, and I have spent years researching a life-changing operation called Selective Dorsal Rhizotomy (SDR). The operation does not cure cerebral palsy but removes muscle spasticity (stiffness) by cutting the nerve rootlets in the spinal cord that are sending abnormal signals to the muscles. While it is a risky operation, the results can be, quite simply, amazing. The outcome is not guaranteed, of course, but there is every reason for Tehina to hold hope for the quality of life that awaits her on the other side of this surgery. It will be a long process for recovery, involving a lot of intensive physiotherapy, but we have no doubt in Tehina's might and determination.

Now that she has been approved and scheduled for this surgery, we need to raise funds quickly. She’s very tight and experiencing pain in areas of her body that should not be sore, so this relief

will be a dream come true!

Thank you so much for visiting this page, for helping Tehina finally take control of her legs, and playing a vital role in improving her quality of life as any nine-year-old deserves.