I had a lovely pregnancy. There were no complications. Nothing abnormal showed up in any of my blood work or sonograms. My husband, Ryan, and I were just blissfully expecting our first child, a healthy baby boy, in August. As a lover of learning, I attended online breastfeeding classes and took diligent notes along the way. I had diagrams for how to express milk, tips for different holding positions, and all the definitions I needed. On the second page surrounded by stars was my goal set in big bold letters: “Breastfeed for the first year.” I was truly looking forward to nursing and feeling hopeful that it would go well for us.

Elliot was born August 3rd at 12:10 pm and before the end of the day I had already met with a lactation consultant at the hospital to ensure that our feeding journey was off to a strong start, and it was. It wasn’t easy, but each time we nursed we both got better at it. I loved the connection. I was thrilled with my milk supply. I was relieved.

Fast forward to Elliot’s fourth day of life. We were in that delirious, exhausted, new parent haze but happy at home with our baby. We got a call from Elliot’s pediatrician informing us his newborn screening showed a positive result for something we had never heard of before... Galactosemia. The next step is another blood test to confirm the diagnosis, and the recommendation is to stop breastfeeding immediately. Pause in the story so I can tell you a little bit about what Galactosemia is. People with Galactosemia are missing an important metabolic enzyme needed to process galactose (one of the sugars in lactose). Because their body doesn’t have the necessary building blocks to break down galactose, it just builds up in their system to the point where it becomes toxic. Imagine a funnel that is clogged and you’re trying to pour water in. Maybe a drop goes through here and there, but if you keep pouring water into the funnel, it will eventually overflow. A newborn with Galactosemia is in a state of true emergency because what are newborns given to eat? Breastmilk, which is dairy, and has lactose. In the most extreme cases, babies with Galactosemia who are receiving breast milk can go into liver failure and die. We were incredibly lucky Elliot didn’t.

Back to the story... We took our 4-day-old son to get his blood drawn from hairline-thin veins to confirm the diagnosis. At this point, we have been told the recommendation from the genetics team is to stop breastfeeding and switch to soy formula. At the same time, we were also told by our pediatrician that Galactosemia can be a common false positive. Elliot didn’t have any critical conditions at that point and I really didn’t want to stop breastfeeding, especially if the chances were that it would be a false positive anyway. We were torn on what to do, and we didn’t fully understand the state of emergency we were in. After confirming with the pediatrician multiple times that continuing to nurse would be okay, we carried on. Everything I had learned about the importance of breastfeeding was running through my mind. “Breast is best,” right?

I kept nursing until day 10 when it was confirmed that he does indeed have Galactosemia. The precious breastmilk I thought I was giving my son was basically poison to his body. The next few days live as a very cloudy memory in my mind. We were brand new parents, I was still recovering from childbirth and we had just found out our son had a rare disease. I was also dealing with the guilt of the choice to continue nursing after the early screening results. I regret that choice deeply and am still working on forgiving myself. A person with Galactosemia’s first form of treatment is to remove dairy from their diet permanently. I also always feel the need to clarify that Galactosemia is not an allergy and it is not the same as lactose intolerance. People with lactose intolerance can still metabolize dairy, it just doesn’t feel good. Galactosemia is a disease that can result in death if dairy is consumed.

Elliot's first bottle of soy formula given to him by dad at 10 days old

We switched to soy formula on day 10. Ryan gave Elliot his first bottle. I cried. I quit breastfeeding cold turkey. It hurt. I was leaking everywhere. I cried. I thought about pumping to relieve some of the pain but the pump became the enemy. I thought about donating my milk but I didn’t have the emotional strength. Elliot searched for my breast often in those early days. I cried every time. And on top of all of that, it was “Breastfeeding Awareness Month” so my Instagram was flooded with videos and ads promoting breastfeeding. I had to grieve my breastfeeding journey while learning about this complex disease and worrying about my baby’s future.

Enjoying a bottle of soy formula at Santa Monica beach at 1 month old

In time, formula became part of the routine, and to be honest, it comes with perks. The first perk is obviously that my son can actually process it! Elliot started to thrive almost immediately. Perk number two is that Ryan and I could take turns with nighttime feedings. We could also keep track of how much Elliot was eating. It wasn’t the vision, it wasn’t the goal, but it was ultimately what my son needed, and seeing the other silver linings attached helped.

Our journey with Galactosemia is still new. Elliot is 6 months old as I’m writing this. For a long time, scientists and doctors thought that just taking dairy out of the patient’s diet was the cure. In the 1980s they discovered that the body makes galactose on its own, even when you remove it from your diet. The toxic build-up still occurs and can lead to a wide variety of developmental delays. We really don’t know what Elliot’s future holds but we are trying to learn more every day about how to support him best. But one thing I do know for sure... Breast was NOT best for my baby.

Thank you for reading this and taking the time to learn about our journey so far. And now, a small call to action. Galactosemia is incredibly rare (only 1 in about 50,000 Americans have it) and research for this disease doesn’t get much federal funding. The majority of the funding comes from donations made to The Galactosemia Foundation. If you feel so inclined to learn more, head to https://galactosemia.org/. And if by any chance you or someone you know has Galactosemia, we would love to connect. You could email Ryan and me directly at thegalactosemiapodcast@gmail.com.