ST. CHARLES COUNTY, Mo. (KMOV.com) -- A St. Charles County mom, grieving the loss of her baby boy, is finding a way for him to help other babies, just in time for National Breastfeeding Awareness Month.
Katy and Tyler Bone had a nursery perfectly set up when their baby boy, Barrett, was born June 14.
"We thought we were delivering a healthy baby," said Katy Bone.
The couple was looking forward to welcoming a boy after Katy Bone miscarried a son a couple years ago, and then struggled to get pregnant with their young daughter.
"So she was our special rainbow baby," said Katy Bone. "Then we found out very shortly after she was born we were pregnant with Barrett. We were very excited, ready to have two."
But shortly after his birth, they quickly noticed Barrett was struggling to breathe.
"[We knew] just by his cry but we didn’t know the severity of it," said Katy Bone.
After a couple weeks in the NICU, he was diagnosed with alveolar capillary dysplasia.
"It basically means the veins running from his heart to his lungs didn't line up with the air sacs in his lungs. So he couldn't make the oxygen exchange in his lungs," said Tyler Bone. "His lungs were basically not working at all."
Barrett ended up at St. Louis Children's Hospital, where he and his team of doctors and nurses fought hard.
"They were phenomenal," said Katy Bone. "From start to finish, how they handled everything was just exceptional, bedside manner was exceptional, everything that they did. He was alive even longer, I feel like, because of how well they did with him."
Barrett's parents, and sister soaked up every second they could with him.
"Oh, she loved him," said Katy Bone. "He was a lover. He was so sweet.”
"He loved getting talked to, read to, sang to," said Tyler Bone.
Even through the long nights and difficult days, mom Katy Bone was pumping breastmilk for her boy.
"It kept me busy and it gave me hope," said Katy Bone. "It made me so happy, so happy to do that for him."
Doctors calculated exactly how much of his mom's breastmilk Barrett could have each day, mostly through his G-tube, but a few oral drops, too, became part of his treatment.
"He loved it," said Tyler Bone.
"He would suck on it, it was really cute," added Katy Bone.
But after 28 days, Barrett passed away.
"Our faith in God is honestly what kept us standing," said Katy Bone. "Our friends and family, the support of the ACD community really helped."
That's when one of Katy Bone's doctors introduced her to another mom whose preemie baby could benefit from breastmilk. So Katy Bone donated some of Barrett's milk to them.
"And Barrett's legacy lives on through Katy's breastmilk," said Tyler Bone.
Now she is working with a local breastmilk bank to get more of her milk to other NICU babies.
"I feel like it is Barrett giving the milk, too. It is from Barrett. It's his milk," said Katy Bone.
A spokesperson for St. Louis Children's Hospital said the hospital happy to work with local breastmilk banks to help connect NICU patients with screened and pasteurized donor milk for mothers that are interested. You can find out more about how to donate to breastmilk through here.
The condition that caused Barrett's breathing problems and other complications is extremely rare. According to the ACD Association, there are only a couple hundred cases world-wide, and it's nearly impossible to diagnosis before birth.
If you want to learn more about ACD, click here.