***Content Warning*** Some of the information discussed in this article may be difficult to read, as it talks about miscarriage and infant loss.
About the author: Michelle Valiukenas is the proud mom of her angel Sweet Pea, who she lost due to miscarriage, her angel daughter Colette Louise who she lost at nine days old, and her only living child, her rainbow baby, Elliott Miguel. Inspired by her journey with Colette, Michelle and her husband founded The Colette Louise Tisdahl Foundation, whose mission is to improve outcomes of pregnancy, childbirth, prematurity, and infancy, as well as aid in the grieving process through financial assistance, education, and advocacy. Their flagship program financially assists families dealing with high-risk and complicated pregnancies, NICU stays, and loss. The organization’s ability to help families relies on donations and grants and they are grateful if you are able to donate. Michelle also participates and advocates on issues of maternal health, maternal mortality, infant health and safety, and pregnancy complications. Michelle lives in Glenview, Illinois with her son Elliott, husband Mark, and dog Nemo.
Here is my story in a nutshell: I am a mom who has been pregnant twice, lost one child to miscarriage, given birth once, pumped and produced milk for my daughter who spent her short life in the NICU before we lost her at nine days, then went on to have a rainbow baby via gestational carrier and attempted unsuccessfully to induce lactation.
I worked with a lactation consultant and my OB to induce lactation. I was put on a course of drugs to stimulate hormones into producing milk and then a few weeks before our son Elliott was due, I started pumping. I felt good about the process. I had pumped with my daughter who was born at 24 weeks and 5 days and produced a good amount of milk starting about day four or so. Because of that experience at such an early gestational age, I figured inducing would be similar. I was actually excited to pump and to do something physical for this child, like I did for my daughter.
I got myself nice and comfortable and put everything on and as the machine whirred and made its noises, the flashbacks started. All of a sudden, it was like I went from my bedroom to being back in the NICU. I could see all the wires, the tubes, my daughter who was super small. I was shocked at how triggering it felt to just have this equipment on me, to hear the sounds of the machine. I turned on the TV in a desperate attempt to silence this machine, but the damage had already been done. I now hated this machine and therefore I hated pumping. As the days went by, I continued to pump, but I grew more and more bitter and angry about the process, especially as no milk came out. People in my life tried to encourage me, to tell me that merely trying was more than enough. Other moms told me that when I could hold my baby, hear my baby cry, that would be the magic solution.
But, when my son arrived and I held him, the milk still did not come. I tried and tried, I pumped like crazy, I drank every tea and took every herb imaginable, and still nothing. I would Google all the tips and tricks, message my lactation consultant, just searching for the one thing I had not tried, the one thing that would change everything. My son was doing well, our surrogate was pumping for us, so he was having some breast milk, but I still wanted and needed to do it myself. It became an obsession.
As the pumping sessions went on, I felt like a failure, a fraud. Not only had I not carried this child, but now I could not even provide him my own milk. It harkened back to all the trauma I had with Colette—being hospitalized with severe preeclampsia at 21 weeks pregnant, delivering her at 24 weeks and 5 days, losing her after nine days in the NICU—and how much I felt like a failure, like my body and my status as a mom had not saved her.
But, the other reason why I became obsessed was something I realized after my son turned a year old. Stopping did not seem like an option, even though my husband was really pulling for me to or others were telling me it was okay to stop. And a year later, it finally clicked. At that point, stopping meant something bad. My only experience with stopping pumping and breastfeeding was that my daughter had died. Had she lived longer, I would have kept pumping. The only reason why I stopped was her death. And so it was too difficult to stop with Elliott and it just did not compute in my head that I could. It felt like if I stopped with Elliott, it would mean something way more significant than just stopping. It was not until a text exchange with my sister in law, who I adore and who is one of my mom role models, in which her simple text of “how is breastfeeding going” turned into a verbal diarrhea from me and her response of “if you stop, he will be okay” that I actually considered stopping. It was shortly after that text that I turned to my husband and asked, “If I stop pumping, am I a bad mom?” He of course instantly said, no, and then pushed again to stop for my own mental health. And so I did and my son was okay and just recently turned one year old, a healthy, vibrant kid who got some breast milk from his gestational carrier and a mom who was no longer creating unnecessary stress on herself.
But, how could any of this gone differently? Well, I wish that I had been given better directions and options when Colette died. To me, at the time, I could only put together, you have been pumping for your daughter, your daughter died, and so you stop. Months later, I would hear about moms who continued pumping after their child died and donated that milk. I would mourn and still mourn not being presented with that option.
I think being given that option would have given me some control in a situation that felt so out of whack and control. Whether I decided to or not, it would have been a decision I would have made. I think that it may have helped some of the physical effects and perhaps physically made inducing lactation easier.
More importantly, I think it would have been healing for me. I think knowing that I was producing milk, Colette’s milk, and giving it to other families who needed it would have felt like Colette was still alive in other babies. I also think that the trauma surrounding the act of pumping would have been minimized because it would not have just been about pump, pump, pump because your preemie daughter needs this, but it could have also been about the less stressed, more giving nature as well. While all my memories of pumping Colette seem to only be about pumping in my hospital room or in a family room in the NICU, being able to choose a nice spot, pump, and think of Colette a few times a day as I slowly weaned off pumping might have meant that when I started pumping for Elliott, I would have had other memories besides the chaotic, stressed nature of the NICU.
I always wish we talked about loss more, that we were open and honest about the fact that babies do die sometimes, but I also wish we supported loss parents more. While a lot of people came in and out of my hospital room to help me start breastfeeding with Colette, no one came after she died and talked to me about how to stop breastfeeding. No one told me that there were other options besides quitting cold turkey. No one told me that I could donate the milk or slowly wean off it. And as a result, my experience with breastfeeding remains a trigger, a source of trauma and defeat, instead of an uplifting, healing, helpful experience. It is long overdue for us to be honest, to confront the uncomfortable nature of death, especially the death of babies, and support parents who are going through this journey.