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Mar 11, 2017 Latest post:
Jul 5, 2017
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place about our baby Zoe.
When we went in for our 13 week ultrasound for our first child, we were incredibly elated to see our active little baby moving around carefree on the screen, and so were in shock when the OB told us she was sending us upstairs to the perinatologist to have a second look as a strange lump on the back of baby's head. The second ultrasound confirmed that our baby has an occipital encephalocele, or hole in the back of the skull caused by improper closure of the spinal cord. On top of this, they were detecting some abnormalities of the kidneys, and said there might be other possible defects that were too small to see. After consulting a geneticist, we decided to do genetic testing to see if these defects were caused by the presence of an extra chromosome or possible chromosome breakage. The test came back negative for any apparent chromosome error, and we also found out we were expecting a baby girl.
We had already been talking about baby names and the name Zoe had stuck out to us for a girl's name. Hearing we were having a girl, we starting looking up name meanings, and found that "Zoe" means life, in the sense of a life lived and not just a biological occurrence. We liked the middle name Louise, and found it means warrior. The name worked perfectly for our little girl who we already knew was going to have some troubles in her life and was already holding on.
Our 17 week ultrasound clarified for us what kind of warrior our Zoe has been - her kidneys have swollen incredibly to fill her entire abdominal cavity to her diaphragm. Kidneys of this size have very little function and keeps the baby from producing necessary amounts of amniotic fluid. This in turn keeps the lungs from getting a chance to practice breathing before birth. The co-occurrence of swollen kidneys and encephalocele has the doctors guessing she has a rare condition called Meckel-Gruber syndrome, though she will not receive a diagnosis til birth. The bottom line is that while Zoe has a safe place inside mommy, her lungs will not function properly outside the womb and are expected to collapse within minutes to hours of birth.
While our little girl is not expected to live long, we are trying to give value to every moment she is with us. She is our precious little gift from God and He has a plan for her life - this site is in part to help share her short story with others.
Please view our journal entries for the most recent updates on Zoe's condition. We appreciate your support, prayers, and words of hope and encouragement. Thank you for visiting.