BRAEDEN – 9 YEARS OLDRetrun to 22q Stories
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I found out I was pregnant in February of 2003. At the 10 week mark they were having a hard time finding the baby's heartbeat, so they did an internal ultrasound. Finally hearing that little bump bump set my mind at ease. After a great pregnancy, Braeden was born after a very quick labor, and after being suctioned out after having meconium in utero, he was given a clean bill of health. He was 6 pounds, 13 ounces, and 18 1/2 inches long. However, he was hoarse for the first year of his life. We thought it was due to the suctioning. When he was 15 months old, he had a scope done where he was diagnosed with severe GERD, needing increasingly higher doses of medicines. Also, due to the hoarseness, his speech never developed. We saw a developmental pediatrician for this when he was 3. He ran a series of tests, just in case, and sent him to a cardiologist because of a murmur he detected. We saw the cardiologist for an echo where he discovered an arch to his chest indicative of 22q. Also, during the appointment we got a phone call from the developmental pediatrician saying to come see him immediately. He reiterated the 22q diagnosis that same day. It was determined that the malformation was just a fluke. No one else in the family has it or is a carrier.
After that he started a whole barrage of tests. A ct scan detected a minor aberrant right subclavian artery. (One of the arteries that extends from the heart to the arm via the neck is transposed out of the neck completely). The GERD diagnosis, the speech delay diagnosis, and reactive airway disease were the first confirmed. It has taken the past 6 years to learn the scope of his disorder. After having a severe hypoxic incident requiring an ambulance call, he had a Nissen Fundoplication. That is a procedure where they take the top of his stomach and wrap it around the bottom of his stomach. That procedure cured his GERD but has since led to many other stomach issues the doctors can't figure out. He has also gotten diagnosed with anxiety and OCD. And, low IQ scores due to cognition issues. Braeden has issues with language and expressing himself. And, continues seeing many specialists.
Braeden has tight muscles and weak joints. Weak hand strength affecting his dexterity. He sees a physical and occupational therapist for these issues. The Velo part of the disorder is a bifid uvula that has required 5 sets of ear tubes due to fluid backup and severe ear infections. Besides that, though his immune system is intact. For the most part he has a benign version of this disorder, for which we are very grateful. He may be able to overcome his low IQ scores, his stomach issues, and his ear issues. His eye site is perfect, and his anxiety is well handled on medicine.
Braeden is a very happy little boy. He's super active and a little comedian. He's the light of our lives. His disorder does not define who he is, nor does it set boundaries in his personality. I've heard before that genetic disorders are mother nature's way of trying to perfect her creations. I couldn't agree more.