CHARGE Syndrome

Rylee Myers

shannon_serendipity — Wed, 24 Jun 2009 18:43:06 -0400

The pregnancy ran pretty well, considering my last son I was hospitalized the month before and he was c-section a month early and still 11lbs. Rylee however, I was told was going to be an average size baby. Until the last month of pregnancy my tummy started growing dramatically. I was sent for ANOTHER ultrasound where the technician found abnormalities with his brain and kidneys.

Tyler James Matthew

Tyler Matthew — Thu, 05 Jun 2008 18:31:22 -0400

Our son, Tyler James Matthew, was born to us on August 2, 2004. He was one week late and was an induced delivery that ended in an emergency c-section. The moment they placed him on my chest, I knew he wasn't breathing deep breaths. He seemed to be struggling...as though he were drowning. They suctioned and suctioned with no relief. For the next 2.5 weeks we spent time in our birth hospitals NICU. The entire time the doctors/nurses tried to diagnose him...forgetting to 'treat' his presenting problem. His breathing. For 17 days he underwent test after test while struggling to breath.

Noah Deroeven

Noah Deroeven — Fri, 09 May 2008 15:52:25 -0400

Our son Noah Joesph Deroeven was born July 98. He was diagnosed with Charge Syndrome. He has had a trach since about 6 weeks, He has bi-lateral parallysis of the vocal cords, reflux which is why he has had a fundo done and a mickey in place. So far doctors have given us no reason to hope for decannulation, but maybe some day. He goes in to HSC in Toronto next week for about his 6th or 7th bronch, cross your fingers...

Cheers!!

David
dm.deroeven@sympatico.ca

Eileen Valentine

Eileen Valentine — Wed, 30 Apr 2008 16:56:19 -0400

My daughter Eileen Kaitlan Valentine was born on June 18, 2000. She was 34 weeks. Eileen was born with CHARGE Syndrome. She has Bilateral macular colobomas ( she is blind), Thickened bicuspid aortic valve, heart murmur, bilateral choanoe atresia (has stents in both nostrals), already experiencing developmental delays, her inner ears are deformed causing her to be deaf, mild facial palsy, swollowing problems, bad reflux, g-tube, full fundo wrap, sleep apnea, tracheomalacia, laryngomalacia, and now a tracheostomy.