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Holoprosencephaly and Profound Deafness

Published: October 27, 2016 | 5 minute read
Categories: Hurt Kids / Hurt Kids Success Stories / Success Stories with Brain Injured Children

Brain Injured Kids Still Have a Fighting Chance

Solution: Implants or Hearing Aids? No - Stimulation and Opportunity

After a challenging pregnancy, Koshiro’s mother was told her baby was in a face position, and he would have a difficult delivery. The doctors used vacuum extraction during the birth process, and the baby was screened early on for the problems that his doctors thought were inevitable. Brain injured kids from a difficult birth or other issues can be helped.

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Baby Koshiro

Tests showed that the baby had no response to sound - brain injured kids may have a wide range of health issues.

Soon, parents were told that their baby did indeed have serious problems. His diagnosis was congenital hypoplasia of the brain, holoprosencephaly (a single lobe brain structure) and profound deafness.

After many auditory evoked potential tests, to which the baby had no response, a CT scan was done. It showed that the structure of his auditory pathway was intact. His problem was in the brain.

It was critical that his parents had that CT Scan done otherwise it may have been assumed that he needed cochlear implants. To install the cochlear implant part of the auditory pathway is permanently removed. Once this surgery is done there is no going back.

Hearing aids were soon prescribed and plans were made to enroll the little boy in a school for the deaf when the time came.

At age 2, he was unable to move, had severe hearing problems and he could only see at near point.

Koshiro developed at a very slow pace. At two years of age, besides his hearing problems, his vision was limited to only near point and he was unable to move.

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Little Koshiro was unable to move

He received conventional therapies but had little progress. But, his determined parents continued their search for more and better answers for their little boy. Koshiro’s parents learned about the What to Do About Your Brain Injured Child course when Koshiro was nearly 2 years of age, and immediately they registered to attend.

Immediately after the course, Koshiro’s parents embarked on a home treatment program with their son, using all the knowledge they had gained, and with strong and enthusiastic support from his older sister. They improved the little boy’s diet by introducing much healthier more wholesome food. They made sure he had plenty of opportunity to move freely on the floor without restrictions. They began an intense auditory stimulation program to improve his hearing with the goal of getting rid of the hearing aids. Brain injured kids can develop with an intense program designed with stimulation and exercise to help them overcome their specific challenges.

After 12 months of program for the first time he was hearing, seeing at far point, and moving and he was healthy!

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As soon as parents began they saw progress immediately.

A year later, they brought their son for his first evaluation. Due to their hard work, Koshiro was much healthier, he was no longer constipated and no longer made frequent visits to his doctor for special care.

He went from immobility to being able to move. He was now crawling all over the house, going anywhere he wanted. His adventurous spirit was greatly enhanced by the fact that he could now see so much better - not just near point vision any more but good consistent far point vision as well. Most striking of all, thanks to the intense auditory stimulation program he was beginning to hear everyday household sounds without his hearing aids.

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For the first time Koshiro could move!

The Staff designed Koshiro’s new program which would include oxygen enrichment, more auditory stimulation, tactile stimulation, as well as a physical program, an intellectual program and, of course, a carefully designed nutritional program.

Next step: Reading, creeping and walking!

In the year following his first visit with the Staff, Koshiro could creep on his hands and knees all around the house, and he was beginning to learn to walk. He had not had an illness for a full year.

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Koshiro creeps to read a book!

He no longer uses hearing aids since he can hear and understand without them and he has even begun to speak.

Now that Koshiro could creep everywhere on his hands and knees, The Institutes staff and his parents have set their sights on helping him to start walking. With the help of the Overhead Ladder, this goal seems very possible to achieve.

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Koshiro on the pathway to walking

And his hearing? He no longer uses hearing aids since he can hear and understand the conversations going on around him without them. He has even begun to speak, and join in!

Koshiro and his family have defied his grim diagnosis proving once again brain injured kids do have a chance.

Of course, Koshiro’s parents and his sister are very proud of him. Together they have defied his grim prognosis. They could have given up and accepted his fate. He could have ended up with cochlear implants which would have made natural stimulation of the auditory pathway impossible - he would never have been able to hear in the normal way he hears today. Instead they chose stimulation and opportunity and, yes, a lot of hard work along the way but today they are reveling in watching their little guy continue to beat the odds each and every day.

Koshiro is not done he still needs to walk and talk but he is a very different boy than he was two years ago we look forward to all the great things he will achieve with mother and father and sister in the next two years.

See the results that were achieved by 3,024 Brain-Injured Children View All

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