This mom knew her daughter had a rare birth defect. She gave her 21 minutes of life

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This mom knew her daughter had a rare birth defect. She gave her 21 minutes of life

Indiana mom and TV news anchor Brooke Martin will hold a celebration of life for her daughter Emma Noelle to honor those impacted by infant loss.

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An Indiana mom and TV news anchor has shared details of the short life of her daughter, Emma Noelle, who was born last week with a rare and fatal birth defect.

Brooke Martin gave birth to Emma Noelle at 8:45 a.m. March 15 at St. Vincent Hospital for Women and Children in Indianapolis, Ind., Martin announced on her Facebook page Tuesday morning.

Emma Noelle lived for 21 minutes.

Anencephaly is a rare birth defect that leaves newborns without the tops of their skulls and brain. Martin and her husband, Cole, shared the diagnosis in November, about two months after announcing the pregnancy. The couple also have a son, Max, who was born in 2016.

"Her perfect lips. Her sweet button nose. Her pretty eyes. Her big feet and long fingers. Her chubby thighs and soft skin," Martin wrote. "These are thing things I’ll remember about our Emma Noelle. Those, and so much more."

What is anencephaly?

Anencephaly is a rare and fatal neural tube defect that affects the development of the fetus' brain and skull. It occurs in 3 out of 10,000 births each year in the U.S., according to the Centers for Disease Control and Prevention.

When the neural tube develops, it forms the baby's brain, skull, spinal cord and back bones, according to the CDC. Babies with anencephaly are born without the top of their skulls, leaving the parts of the brain that do develop exposed. There is no known cause.

Normal rules apply. Discipline the child who stutters just as you do your other children and just as you would if he didn’t stutter.

The abnormalities are usually discovered via ultrasound during the mother's second trimester. Some families choose to terminate pregnancies after the diagnosis, while others choose to carry the fetus to term or until its death in-utero.

Anencephaly babies typically survive minutes to hours after birth, although some can live for several days.

Martin shared updates to her Facebook page periodically throughout the pregnancy. In a video message to supporters posted March 13, Martin said the experience had been slightly different than anticipated.

"I thought that leading up to the delivery I would be filled more and more with just kind of uncertainty and dread and just anxiety, and really the opposite has happened," she said. "Don't get me wrong, we've had periods that have been very emotional and uncertain, but this week has brought incredible renewed hope and strength and peace."

'Celebration and honor for these children'

Martin will be taking time off after the delivery.

In the video posted March 13, Martin said her email will be disabled during her leave, but she will occasionally check her Facebook and Twitter pages.

Don't raise a spoiled kid. Keep this thought in mind: Every child is a treasure, but no child is the center of the universe. Teach him accordingly.

Martin also asked supporters to save the date for Emma's celebration of life, which will be held at 10 a.m. April 27 at Traders Point Christian Church in Whitestown, Ind..

The celebration will be open to everyone, and Martin encouraged viewers to share the information with parents who have experienced the loss of a child.

"I cannot wait for it because it's going to be a time of celebration and honor for these children," Martin said in last Wednesday's video, "and just to say, speak and write their names and just talk about the legacy that their little lives have made on us and the world."

Martin, who has relied heavily on her faith throughout the process, left viewers with a Bible verse: Psalm 16:11.

"You have made known to me the path of life, in your presence there is fullness of joy and at your right hand are pleasures forevermore."

"I love that because it is so hopeful," she said, "and we have experienced the hope of Jesus Christ in a way that has just been profound and life-changing for us."

In her post announcing Emma's birth Tuesday morning, Martin said she and her family continue to feel that God is with them.

Reduce the pace. Speak with your child in an unhurried way, pausing frequently. Wait a few seconds after your child finishes before you begin to speak. Your own easy relaxed speech will be far more effective than any advice such as “slow down” or “try it again slowly. For some children, it is also helpful to introduce a more relaxed pace of life for awhile.

"I wish I had the time to tell you every way in which that came true, every detail that was meticulously orchestrated and miraculously provide," Martin wrote. "Emma Noelle changed our lives. Emma Noelle showed us Emmanuel."

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