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14 Hours Strong: Helping families through life-limiting prenatal diagnosis

Graham Notenbaum lived just 14 hours, but his life is having a lasting impact.

Emily and Jordan Notenbaum know more about loss than any parent should. 

They lost their son Graham shortly after he was born from a terminal diagnosis they learned about five months into the pregnancy. 

Now, the East Grand Rapids couple is looking to help bring comfort to other parents and children dealing with some of life's most challenging circumstances.

Meet the Notenbaum family: Mom Emily, Dad Jordan, 5-year-old Madison and 2-year-old Kennedy.

But there is someone else who is very important to them.

"We had a baby boy in October. At our 20-week ultrasound, after a completely normal pregnancy, he was diagnosed with Spina Bifida and Trisomy 18. We were told that the chances he would make it to birth were extremely extremely low," explained Emily.   

Graham defied the odds...living 14 hours after birth.

"His birth went amazing, the girls were able to come into the hospital room, despite COVID restrictions, we had a photographer there. It was amazing, also shocking, probably the happiest moment but the saddest moment too," Emily said. 

The family was left to process this heartbreaking loss.

"The girls helped Emily and I both immensely. They just seemed to understand and get it. You know obviously they are sad and heartbroken too...they talk about baby Graham every day and how much they miss him and wish he was here. So its impacted their life in a positive way too because of the love and compassion that it's taught them," explained Jordan.

Before Graham was born, Emily received a care package with meaningful items that help her cope today.

"It had preemie clothes in it. Often babies diagnosed with Trisomy 18 are small, so they fit him. Now I use them as comfort items," Emily said.

Now she is doing the same for others, providing care packages filled with carefully curated items specific to each family's experience.

And with that, 14 Hours Strong was born -- a non-profit that places an emphasis on the other children in the family too, providing books to explain death to children in a way they can understand.

"It helps them feel remembered, it's hard for them not to feel overlooked when the conversation is constantly about the loss and pregnancy. That's kind of the goal."

The family is helping others, all while honoring Graham.

"I appreciate anyone who will listen to me talk about him, bring him up, it really means more than anybody could know," Emily said. 

Visit 14hoursstrong.org to nominate a family who could benefit from the help and resources of this non-profit. Or if you are inspired to donate to help others, you can do that as well.

RELATED: Holland mom channels her grief to create Blossoms of Joy in honor of her daughter


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