GRAND RAPIDS, Mich. (WOOD) — A mother in Grand Rapids is still coping with the death of her son one year after he died in the hospital.
Emily Notenbaum only had 14 hours with her baby boy Graham before he died.
At Notenbaum’s 20-week ultrasound, she and her husband found out about Graham was diagnosed with spina bifida. The next day he was diagnosed with Trisomy 18. Both defects affected Graham’s lungs, heart and spine.
Notenbaum was told he wouldn’t make it to birth and if he did, he would have to undergo several surgeries.
“Throughout the pregnancy, we met with many specialists and doctors who would have been able to help him had he been able to make it longer. The prognosis for his condition is not very good,” Notenbaum said.
Graham would have turned a year old this month.
“Not a day goes by that we don’t speak his name in our house,” Notenbaum said. “It’s very important to us to incorporate him everyday in our daily activities and talk about him openly with our family and friends and our daughters.”
Notenbaum and her husband lost a son and their two young daughters, Madison and Kennedy, lost a baby brother. Notenbaum said Graham’s death was difficult for everyone in the household and they found comfort and support from family and friends. At the same time, the Notenbaums sought connections with others who had lived through the same pain.
The experience led Notenbaum to start a nonprofit called 14 Hours Strong.
“I knew his life had to have meant more than those 14 hours,” she said. “I thought the best way we could do that was helping other families in similar situations as us.”
Her organization makes contact with families who have received a difficult diagnosis, have had a miscarriage or whose baby will be in the newborn intensive care unit. These families are given support and a care package filled with items like journals, devotionals, stuffed animals, books and some baby clothing.
If the baby dies, the families are sent a remembrance gift. Each gift is personalized for each family. Siblings are also left with a gift as well.
“We really want those people to feel supported day to day and break the stigma that you can’t talk about it. Those children are just as much your children as any living child,” Notenbaum said. “Let yourself feel all of the feelings. Everything that you’re feeling is valid. Don’t let anyone to let you feel a certain way. Turn to your support system and don’t be afraid to ask for help. Reach out to somebody. Reach out to our nonprofit.”
Friday is National Pregnancy and Infant Loss Remembrance Day. Notenbaum wants to help anyone who is faced with this experience. You can find 14 Hours Strong on Facebook and Instagram or visit their website here.
“We can help you find other people who are going through similar stuff and really connect with them. That is really crucial through the process,” Notenbaum said. “And also make sure you share your story. That’s what really helped me cope.”