Stories of Lost Children
Our Little Ivan
by Jessica Mayer, Douglasville, GA, U.S.A.
Our son Ivan was born on March 23rd 2004. I had a good pregnancy until Valentines Day when I had pre-term labor complications. The doctors put me in the hospital on a Mag drip for 1 week to stop my labor. I was then put on bed rest for the remainder of my pregnancy. On March 23rd my water broke(I was 36 weeks). Ivan was born 8 hrs later. He had multiple birth defects; Cleft Palate, Clubbed feet, Webbing on his neck and arms, contracted arms and an inset jaw. They sent his pictures to a genetic specialist at Scottish Rite in Atlanta. He diagnosed him with Escobar Syndrome; a rare autosomal recessive genetic syndrome. He was transfered to Scottish Rite on March 26th. At two weeks old he had surgery to fix his jaw. They put a trach in at this time to keep a patent airway. He was placed on a ventilator. As he grew his lungs did not; Hypoplastic lungs are part of the syndrome. He also had major deformities of his spine. He had high blood pressure and reflux disease. We were told on July 16th by all of his doctors that he would always be vent dependent,he would develop slowly neurologicaly,he would never walk b/c of the spinal deformities and the orthopedic issues. They said he would have a poor quality of life and a dismal future and a short life span. On July 22nd we de-escalated care and let our precious son go to heaven. He passed away one hour after turning off the ventilator. I know we did the best thing for him but it still hurts so much.M y email is jesmayer@comcast.net if anyone would like to talk.
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