Our Supporters & News Stories Children's Stories Ethan's Story We help Ethan who has Spina Bifida Ethan is two years old. He first attended Brainwave with his mum when he was 18 months old. Ethan was diagnosed with Spina Bifida at sixteen weeks of development into his mum’s pregnancy. He was born at 36 weeks following a spontaneous labour due to a placenta abruption. Following a short labour Ethan was born weighing 6lb 5ozs. Ethan was transferred at birth from his local hospital to another hospital that specialised in neurological surgery where they surgically closed Ethan’s spinal lesion. Unfortunately Ethan stopped breathing at seven days old and needed to be ventilated. He was transferred to the special care baby unit where an external drain was fitted to help reduce his developed hydrocephalus. His first shunt was fitted at sixteen days old, which later became blocked at five weeks old and an additional shunt was fitted in January 2013. Ethan was also born with dislocated hips and Talipes Equinovarus (club foot) affecting both feet. Ethan was placed in a hip spica to help his hips set into place and surgery was performed to correct his feet at three weeks old. Ethan had some initial swallowing problems however they resolved relatively quickly as he began to develop. When Ethan first came to Brainwave he had just developed independent head control and sitting balance. To maintain sitting balance Ethan used a very wide base of support, with his legs splayed out to the side. He had no problems with any movement with his arms or hands. Ethan’s primary method of mobility was commando crawling by which the majority of the movement was performed with his arms secondary to the lack of movement within both of his legs. As Ethan’s Spina Bifida has affected the development of his leg function, Ethan’s mum purchased a “U scooter” which enabled Ethan to mobilise at a greater speed by using his upper limbs. Overall this improved his level of independence whilst at home. This was great for Ethan as it also helped to develop the muscles around his shoulder joints, which he would require for crawling later down the line. To date Ethan continues to be very active. His upper limb strength has improved significantly and presents with no scapular winging. He is now crawling short distances of approximately 1 to 3 metres. When crawling Ethan reciprocally steps both arms and legs. His active movement has increased within his left leg and he uses the movement of the left to compensate for the lack of movement within his right. Currently Ethan has flickers of movement within his right leg but this has only been demonstrated intermittently during hip flexion when crawling. When Ethan begins to tire he will lower himself back into commando crawling as this is less effort and a faster form of mobility. Ethan’s transition of movements has significantly improved and he will now independently transfer from the prone lying position (lying on his tummy) up into crawling on verbal command. Ethan will also transfer from side sitting into ring sitting (legs out to the side) with minimal effort. Ethan now plays happily in low and high kneeling. He demonstrates more core stability as he requires less support whilst in kneeling and he can play with one hand whilst maintaining his balance. Ethan now spends less time lying on his back as he is more interactive with his environment and he has successfully developed his transitions of movement. Although Ethan still requires support in standing, he is much more active at maintaining his own balance and when he is wearing his knee gaiter splints he can stand with minimal support whilst he is playing to a surface. When Ethan returned to Brainwave in May 2014 for his reassessment he had progressed so much, we gave him three certificates of achievement: Beginning to independently crawl Improved speech and communication Independently pulling up into high kneeling To find out more about how we can help your child, please click here to contact us.