Family Story:
ZANDER AND SARAH
written: March 2020
location: USA
Zander was born on Sunday June 16th 2019 at 9:44 am. He weighed 6lb 3oz and was 18 inches long. He was born by emergency c-section. He didn't breath on his own right away, sadly causing him a brain injury (stroke). He had a rough start from very beginning.
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Zander has VSD, a structural heart abnormality which is a defect in the ventricular septum, the wall dividing the left and right ventricles of the heart. The Doctor told us he has multiple holes in his heart. In addition to the stroke at birth, he also has what is called white matter disease and water on his brain (hydrocephalus). He has dystonia (muscle disorder causing parts of his body to twist involuntarily, resulting in repetitive movements) and pulmonary hypertension (high blood pressure). He also has interstitial lung disease which resulted in him needing a tracheostomy which is a small hole made into his throat for air to pass to his lungs more easily to help him breathe.
Zander also required a G/J tube (Gastro-Jejunal Tube) placed in the stomach in order for us to safely give him his feeds and medicine.
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On December 23rd we learned his genetic testing results were back. We were told that Zander has what is known as NAA 10. They told us there were 2 version of the syndrome and that Zander had Ogden syndrome. We had been looking for another living male but had yet to learn of one.
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Zander is 8 months old. He is still mentally and physically around the developmental age of a 2 months old. He can't hold his head up, sit, or roll over, but he is very aware of his surroundings. He really loves his music. Doctors have given us little hope but we are happy just with the small goals he achieves. Our 1st goal is to celebrate his 1st birthday and we plan to celebrate it at the beach! After this its just baby steps one day at a time and enjoying his smiles and cuddles.
Zander is a true miracle!! Sadly we learned that this will be terminal for Zander which was more than overwhelming. We are lucky that we have an amazing support system.
Zander was the only living male that we knew of so far and all the others that we had learned of were girls.