A bereaved mom shares her story of losing twins and donating their milk, with love and pride, to help other babies.
By Megan Boucher
We began our journey five years ago. Soon after were married, we started trying to get pregnant. That proved to be more of a challenge than we ever expected it to be. After three years with no success we tried fertility medications. Two different medications and four months later we still weren’t pregnant. We were starting to feel hopeless, and then learned that my husband’s insurance at his new job actually covered a big percentage of in vitro fertilization (IVF). We booked the appointment and were soon on board with the IVF process. We transferred two embryos, and to our surprise, both stuck. We found out that we were having a boy and a girl. We couldn’t have been happier.
Then at our 19-week scan we were told our baby girl had a heart defect and possibly Down Syndrome. We spent the rest of the pregnancy preparing ourselves for what lay ahead. We knew she would need heart surgery very soon after she was born. We were scared, but did what we could to prepare to take care of our little girl as best we could.
“The most beautiful things I had ever seen”
On January 30 I went in for my scheduled c-section. The babies were 36-1/2 weeks old. They weighed 4 lbs, 1 oz and 4 lbs, 15 oz. They were the most beautiful things I had ever seen. I couldn’t wait to get to the NICU so I could be with them and hold them.
Things seemed to go downhill quickly, though. Marlowe’s heart defect was worse than they had expected. Her chromosomal test came back negative, which made me cry tears of joy. That joy was soon crushed, as they told me something was still not right. They did a full genetic work-up on her, and soon she was diagnosed with a rare genetic disease called nonketotic hyperglycinemia (NKH). This disqualified her for heart surgery. While I spent days fighting and begging doctors to do more for her, I knew deep down that she was dying. I knew I wouldn’t be bringing my baby girl home with me.
Baby Odin latches on
Meanwhile, Odin was not acting like a normal baby. He didn’t cry or wake up. He wasn’t nursing or showing interest in nursing. This concerned the doctors, so they did a genetic work-up on him as well, and to our horror, he too was diagnosed with NKH. We were devastated. My whole world was falling apart. I couldn’t do anything to save my babies. The only thing that made me feel like a normal mom was the fact that my milk supply was abundant. I pumped religiously, every three hours, night and day. Odin received my milk through his feeding tube. I would put him to breast every day, hoping he would latch. I remember one night around 11:00 he latched for about five to ten minutes. I sat there in the NICU crying as he breastfed for the first time.
Losing Baby Marlowe
Marlowe was never able to have any of my milk, which broke my heart. I wanted so badly to nourish her. I knew it wouldn’t cure her, but I kept thinking that she needed to have my milk. On February 11 Marlowe passed away in our arms. It was a horrific day. No parent should ever have to experience their child’s last breaths, and yet here we were, holding our baby girl as she took her last one.
I had to be strong for Odin. He too had this disease and I was completely unsure of his future. He was discharged from the NICU a day after Marlowe’s funeral. We brought him home with a feeding tube and so much medical equipment. I continued to pump around the clock so that he could have my nourishment for as long as he needed.
After a week of being home, we rushed Odin to the emergency room. He was struggling to breathe. Once we were there it was a scene out of a movie—several doctors rushing to save his life as my husband and I stood there, helpless. That day was yet another traumatizing moment. They got him stable and into a room in the PICU at Maine Medical Center, but again things seemed to spiral downward each day.
Losing Baby Odin
I continued to pump while staying in the hospital with him. It was the only thing I could do for my baby. Two days later they told me that he wasn’t going to survive, and we had to make another painstakingly hard decision to take him off the ventilator. On March 4 Odin passed away in our arms—something no parent should ever have to do, and we were doing it a second time.
The amount of love I have for those two babies is indescribable. Even after I left the hospital with no baby in my arms I still pumped. It hurt and I wanted it to stop, but it was also such a final goodbye. It seemed that once my milk stopped I would no longer be a mommy. I know that I will always be a mom, but in the moment it was just another ending, and it made me so sad.
Donating milk with love and pride
I couldn’t fathom getting rid of my milk. I had a chest freezer full of it and I couldn’t let it go. As time passed, I knew that I couldn’t keep it forever, and throwing it away was not an option. I looked into donation because I remembered how grateful I was that Odin was able to receive donor milk until my supply had come in, and I wanted to help other babies receive the same gift.
In a normal world the screening process would have been easy, but in my grieving world it was not. Each step was hard. Each step was emotional. But when I packed up my milk and counted the best I could and saw that I had over 550 oz of milk to donate, I felt so proud of myself. I worked so hard for that milk and every single drop was pumped out of the greatest love. My babies may not have been able to have it for long, but I could use it to help other babies. I chose to give the only thing that made me feel like a mom and for that I am proud.
I love you, my beautiful babies, Marlowe Bee Evelyn Boucher and Odin Wilder Boucher.