At 11 days old, Milo Horner finally got to rest. He’d been fighting for his life for nearly 9 months in utero and 11 days in the neonatal intensive care unit (NICU). Through it all, Milo’s mom knew he was going to do something great in this world, and she was right. Milo left a legacy of love by allowing his mom to donate breast milk so other babies could grow up strong and change the world.
“I was 35 when I got pregnant with Milo and had already delivered a premature baby so I knew I was high risk pregnancy,” said Amanda Horner, Milo’s mom. “I had an ultrasound at 19 weeks and the technician kept taking measurements so I knew something wasn’t right…The doctor diagnosed him with hydronephrosis, which we later learned wasn’t correct.”
With the early diagnosis in-hand, Amanda went to work researching and learning about the condition her son would be born with prior to her next appointment at Akron Children’s Maternal Fetal Medicine (MFM). While feeling ready to talk about Milo’s condition with the specialists, there was nothing that could prepare her for the news that Milo actually had a life-threatening fetal abnormality.
“I remember when Dr. (Melissa) Mancuso was telling me that Milo had Congenital Diaphragmatic Hernia (CDH) my ears started ringing because I knew it was really, really bad,” said Amanda. “I met with Nancy and Sue from Palliative Care that day, right away. They were amazing. Dr. (Harriet) Feick then came over to talk with me about all the different outcomes, what visits were going to look like for us and repeatedly told me not to look on the Internet, just ask her the questions. But, I looked…I learned Milo had a 50/50 chance of survival.”
Amanda began meeting with MFM specialists, cardiologists, neurologists and surgeons to learn how the team was going to care for Milo upon his arrival. She continued to see her own gynecologist, as well as Akron Children’s MFM physicians for weekly and sometimes bi-weekly checkups to prepare for Milo’s arrival.
On June 19, 2015, Milo was delivered naturally and immediately transported to Akron Children’s NICU, which would become his home away from home for 11 precious days.
Milo’s Legacy Lives on Through Breast Milk Donation
“I met with Liz (Maseth) in MFM and she asked me what my experience was with the NICU when I had my older son and what my expectations were for breastfeeding,” said Amanda. “She asked me if I would be willing to donate my breast milk no matter Milo’s outcome. It was an easy decision for me. To make this world a better place you have to give back.”
While desperately waiting for her Milo to gain the strength needed for his first surgery, Amanda began to pump her breast milk. Just a day before his surgery, Milo took a turn for the worse and passed away.
Amanda and family were consumed with sadness, but even with his absence her body was still producing breast milk so she pumped. With support from Liz Maseth, RN, lactation team nurse program coordinator at Akron Children’s, Amanda chose to be part of the Bereavement Breast Milk Donation Program, and donate breast milk to Ohio Health Mothers’ Milk Bank. Amanda also donated breast milk through peer-to-peer milk sharing.
Amanda pumped every 3 hours, every day, for nearly 11 months, helping countless babies and, in the process, helping herself grieve the loss of Milo.
“I would talk to Milo when I was pumping. I would think about his sweet face and his cute little toes…pumping allowed me to connect with him in a way I wasn’t able to do when he was physically here,” said Amanda. “It allowed me to mourn his loss in my own way and he helped me give nutrition to other babies so maybe they’d get to go home to their moms.”
The pumping also helped Amanda’s body release oxytocin, the chemical produced naturally by the body to create feelings of bonding and love, which helped ease the pain of her loss and stay connected to her baby through her grief. She also attended support groups with her family, including Akron Children’s Good Mourning Grief Support Series.
“Akron Children’s really does provide care for the whole family, even when it’s not the best outcome,” said Amanda. “One of my favorite things that they do is they don’t forget about Milo. Every year the Palliative Care team sends us a birthday card on his birthday and invites us to donate a light on the Children’s Tree of Lights in Milo’s memory…The hospital is our family. They were there every single second of Milo’s life and they have helped all of us in some way and we’re so grateful.”
After nearly 11 months and 170 gallons of breast milk donated, Amanda stopped pumping.
“Donating breast milk let me hold on to Milo just a little bit longer… I wasn’t ready for him to go. I like to think he did change lives and I’m proud of him for what he allowed me to do.”
For more information on Akron Children’s Hospital’s Bereavement Breast Milk Donation Program, contact Liz Maseth at 330-543-4531.