Claire at 2 Months Old

Claire was diagnosed with full Trisomy 18 and wasn't expected to live full term, since T18 is 'incompatible with life'. We were told that we (most likely) wouldn't be bringing her home - we grieved. We wanted to meet her. When we realized she would be born on her due date, March 11, 2003, we were scared and excited. She wasn't expected to live through childbirth and to complicate matters more, she was breech. We bought some preemie clothes and prepared for her birth and death. Once she was born very pale, weighing only 4 pounds and 2 ounces, she wasn't breathing and had no heartbeat.

She was revived instantly, and Christened. She wasn't expected to live for long, only minutes, maybe hours, if we were truly lucky. We thought she would be in the hospital for the duration of her short life. Then, after 48 hours in the hospital, we decided to take her home to keep her comfortable. She was 'failing to thrive', and wasn't expected to live more than two more days. Statistics show that 50% of all T18 babies born do not survive past the first week. Only 10% survive to see their first birthday... and, according to our doctors, continuation of a pregnancy with this diagnosis is uncommon.
No one can predict her future, not even doctors. We don't know how long we will have with our baby Claire, and we are blessed with each day we are given to enjoy her. We took for granted having healthy babies and believing they would outlive us, now we know that isn't a guarantee.

We prayed for a miracle when expecting Claire.  We wanted her to be born perfect, with a perfect heart and a perfect brain.  When Claire wasn't born perfect, her brother said to his mom, 'I guess God doesn't answer prayers', but in reality, the miracle we got just wasn't the one we asked for, instead, the miracle we received is that we were able to keep Claire longer than we imagined and with that, we received a new perspective of love. Today she is thriving and doing much better than any doctor could imagine. 

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.