(WAVY) — Lexi and Jacob Merriman remember their beautiful baby girl Presley.
“Honestly it was scary she’s there and we were in NICU, she had tubes in her and everything. She ended up having two chest tubes on each side,” said Presley’s dad Jacob Merriman.
Baby Presley had cysts on her kidneys which caused other problems.
“She didn’t have any amniotic fluid which causes her lungs not to be able to develop,” said Presley’s mother Lexi Merriman.
Lexi underwent experimental amniotic infusions to try and help her baby girl, but after giving birth, their time with her came to an end within 14 hours. She suffered a pulmonary hemorrhage in her right lung
“We looked at each other and we were like this isn’t fair, so we ended up making the decision of turning off the machine,” said Lexi.
The emotions of having a baby and losing a baby in such a short period was trying on the Merrimans, but they had the support of the Star Legacy Foundation to help them get through the toughest time in their lives.
“We’re there to recognize that birth and focus on the families and provide them that time and space to honor the child,” said Caroline Tripp, the family support coordinator for The Star Legacy Foundation.
Through the help of the foundation, they were able to get bereavement photos of their baby girl, but the organization does so much more.
“We’ll help families after they leave the hospital and they need support just working through grief, knowing there’s others in the community that have been through this,” said Tripp.
Stacey Bowstring went through a similar experience. She lost her baby girl in January
“We had a lot of complications. Our daughter had two extremely rare birth defects that weren’t correlated at all. She had a chromosomal deletion and tumors on her mouth and prevented her from ingesting amniotic fluid,” said Bowstring.
She also says the support from the foundation has been what’s helped her begin to heal.
Both Bowstring and the Merrimans are now doing what they can to support the foundation as they push for hospital reform in the military.
“The focus of that bill is to provide consistency within military hospitals, where staff tends to be transient. We want to make sure the staff is educated and supported when families come in during the beginning of their pregnancy,” said Tripp.
“I don’t know what my future will be if we have another child, but if we do I want to make sure we’re taken care of,” said Bowstring.
Pushing for that consistency is something they plan to do.
“Both of us met with Congressman Wittman in a small group and asked him to make a standard of care,” said Lexi Merriman.
For the Merrimans, that’s important because they learned they’re expecting again. They say there’s a 7% chance their baby could go through what Presley did, but they are hopeful for the future.
Both Lexi and Stacey say the organization has helped them so much they now dedicate their time to volunteering for the organization.
For more information about the Star Legacy Foundation, click here.