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    Posted June 17, 2014 by
    nm0809
    Location
    Fayetteville, North Carolina
    Assignment
    Assignment
    This iReport is part of an assignment:
    Raising a special needs child

    John's Cri du Chat Journey

     
    After my husband returned from his 3rd deployment we decided to start a family. A few months later we found out that we were expecting our first child. We were living in Germany, while my husband stationed there. When I was about 5 months pregnant we were told that we would be having a perfectly healthy baby girl. On August 12, 2009 at 2:27 pm (Germany time) we welcomed our Son John Anthony into the world. We immediately knew that something was not right with him, he was born missing his entire right ear. Little did we know how our lives were about to change completely. John was send to a bigger German hospital when he was 2 days old, where he would spend 3 weeks in there NICU. When he was 2 weeks old, we were told that he had Cri du Chat Syndrome, which is a deletion of Chromosome 5. His syndrome is very rare and many physicians go their entire career never seeing a patient with Cri du Chat. The majority of the information available about the syndrome is outdated from the 1970's and 80's. The Professor who was in charge of John's care had never treated another patient with Cri du Chat, we were given a printout from Wikipedia about his Syndrome. In November 2009, he became sick with Bronchitis. The health clinic at the Military installation was not prepared to handle his medical necessities, we were told that he would not survive more than 24 hours. He was admitted to the local hospital while all of the arrangements were made for him and I to return to our hometown in Southern California. We were able to get an emergency passport and we were on the next available flight back to LAX. His dad was allowed to fly with us to Los Angeles but would have to return to finish the remainder of his time in Germany. In January 2010, John once again became very ill, this time his bronchitis had turned into Pneumonia, and was admitted to our local hospital. He spent the next 2 months in the ICU, where after several tests we were told that he had many more health problems than what we thought. He was aspirating which was causing his breathing problems, he had 3 separate heart defects, has only 1 kidney among many other problems. The doctors tried to perform a laryngoplasty to try to correct a floppy laryn but the surgery did not go as planned and a tracheostomy was performed. John spent 11 days in a coma. He was discharged with a g tube, tracheostomy, and apnea monitor. He spent the majority of his first 2 years in and out of the hospital. Right before his second birthday, John was in the hospital when a code blue was issued. He was suppose to be going home without a tracheostomy, instead he suffered from a stroke, and was in a coma. After spending almost 2 weeks in a coma, he slowly began to wake up. The first day when he woke up, he did not recognize anybody, or interact with anyone or anything. He was unable to hold even the lightest object. This was the case for several months, to this day he has not fully regained all of his abilities prior to the stroke. The cells in the brain that regulate his body temperature were affected and he gets fevers that go anywhere between 104-107.8 almost on a daily basis or whenever he is agitated. He would suffer from over 15 seizures daily. In 2013 we rejoined dad at Fort Bragg, NC. and his seizures disappeared without any medication. John will turn 5 years old on August 12. He is currently unable to sit unsupported, walk, talk, crawl. He is physically at the age of about a 3 month old infant. He does recognize familiar faces and interacts with us. He had his Make-A-Wish trip granted in March, where he went to Disney World and had an amazing time meeting of all the characters. Cri du Chat Syndrome affects approximately 1 in 50,000 live births.

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