A Tampa couple is grieving the loss of their daughter who was born with a rare but fatal birth defect.Catherine Mornhineway and Andrew Ford said they got the devastating diagnosis at a 14-week ultrasound.WATCH: Tampa mother give s birth to baby with fatal birth defect to donate organs Tampa mother gives birth to baby with fatal birth defect to donate organsCatherine recalls being able to see her baby kick and move on the ultrasound, but the ultrasound technologist went quiet.She said they were moved to another room."A doctor came in and told us that, you know, the baby had anencephaly, which you know, is fatal. Our hearts dropped and you didnt really know really what to do or say next," said Catherine.Anencephaly is a birth defect where a baby is born without parts of the brain and skull at birth. Researchers estimate that about 1 in every 4,762 babies is born with anencephaly in the United States, according to the U.S. Centers for Disease Control and Prevention.The Tampa couple made the decision not to terminate the pregnancy. Instead, Catherine wanted to carry the baby to term."I was randomly scrolling on Instagram. I came across the Grey's Anatomy clip of the character that ended up being pregnant with the baby with anencephaly, and she decided to go to term and donate the organs, and [the idea] felt really special to me and maybe something we could do," said Catherine.She hoped she could donate her baby's organs.In December, she gave birth to a six-pound baby at HCA Florida Brandon Hospital. The couple named their daughter Haven."We looked it up and as you know, the definition was a safe place, and it just seemed perfect for her," said Andrew Ford.The couple spent time with their daughter before taking her off life support. They brought her outside."She got to feel, you know, feel the breeze and sunshine and it was a just a really special moment with her to be able to do that," said Catherine.Doctors, nurses and hospital staff lined the hallway for an honor walk. During surgery, doctors retrieved a partial heart. The valves from Haven's heart could be used to help young patients. The placenta was also donated and may be used for skin grafts.The couple said they are at peace with their decision."Being in her presence, you could just feel her soul was gentle and kind," said Andrew."I think she'll always be our little Christmas miracle, always celebrate her in a good way," said Catherine. ...read more read less