Written by Michelle Valiukenas
I am a mom of two children, one girl, and one boy. But, the way that you see my children and the way that I parent each of them is very different. My second child, my son Elliott, is almost eight months old, has the best smile, giggles, and cuddles like no other baby I have known, and is desperate to talk.
When you see him with me, he is usually wiggling, looking at the world, smiling, trying to pull my hair or my glasses. He looks a little like me and a lot like my husband. He is a great, happy, wonderful addition to our family, and parenting him is a pretty typical experience—I try to figure out what he needs to avoid the complete breakdown. I probably hold and snuggle him too much. I live to make him laugh, I change diapers, I do silly things to entertain him, I read to him, I put him to sleep, and I love him so incredibly much but worry that I am not doing enough. In a nutshell, I am a mom.
My oldest, my daughter Colette, also looked a little like me. Both of my kids were born with my nose. But, I have no idea what she would be like right now, and if you saw me, you would not know I had a daughter who should be turning three shortly.
Colette died at nine days old after spending her short life inside an incubator in the NICU, born at 24 weeks and 5 days. I did not get to see Colette smile or giggle, I did not get to see her open her eyes, and the only time I got to hold her was when they removed all of her tubes, took her out of the incubator, and put her into my arms to hold as she passed.
Her death did not mean that I stopped being her parent; it just meant that parenting her would be different. I don’t change diapers, I don’t do silly things to entertain her, I don’t put her to sleep, but I still love her so much and worry that I am not doing enough.
As for activities, my method of parenting Colette is to run the organization we created in her memory—The Colette Louise Tisdahl Foundation. Our 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.
When I was pregnant with Colette, after a long infertility battle, three rounds of IUI, three rounds of IVF, one pregnancy, a two-part miscarriage that involved being told I had miscarried, then numbers rising and finding a heartbeat, and then another report of miscarriage as I heavily bled, I was scared and excited simultaneously.
The first 12 weeks were spent in complete terror that I would again miscarry. Passing into the second trimester felt like breathing a sigh of relief. We told the world about our news, allowing our small, trusted group to become so much bigger and cheer us on. We began to plan, to think about a world in which it would not just be the two of us and our little dog. Yes, I was battling terrible all-day morning sickness, and we played the game of what can Michelle eat that will not make her run to the bathroom.
At 21 weeks pregnant, I went to a standard OB appointment, feeling the best I had felt the entire pregnancy, thinking this must be the glorious second-trimester ease that I had heard about but not experienced. The nurse took my blood pressure and then took it again, and then said, okay, I’ll be back in a few minutes to check it again. I had not seen the numbers and assumed it might have been slightly elevated since I had come to the appointment after all day at work and had to walk a decent distance from the waiting room to the appointment room. She came back in, took it, did not say much, and left.
My obstetrician came in and talked to us in her usual calm, reassuring manner. She did mention that my blood pressure was high and then said, I cannot just let you go home; you need to go to the hospital to labor and delivery so they can check you out and monitor you more. She seemed so calm that I thought, okay, this seems like not a big deal. We left, and as we were walking to the car, I looked at the printout of my visit and saw the blood pressure as 180/110 and began to wonder if this was way more serious than I had previously thought. Still assuming everything was okay, we drove to the hospital, joking that I was probably tense from work and that we would get there and my blood pressure would be normal.
That would turn out to be completely opposite of the truth. Once I was put into a room and hooked up to blood pressure machines, my blood pressure was just as high and even rose more. They were having trouble locating Colette on the ultrasound, and after one nurse couldn’t, then she brought in another nurse who then found a resident, who then found another resident before they finally found her and confirmed she was okay. During this game of pass the ultrasound wand, my blood pressure naturally rose even higher, and the original nurse told me, ‘Honey, you’re going to have to calm down.’ Okay, sure, lady, you can’t find my baby, and I just should “calm down.”
I was admitted to the hospital and told that I would be doing a 24-hour urine test. I assumed it would be one night, maybe two nights to stay for the purpose of this test. While they were finding a room for me, I told my husband to go home since our dog had not been out all day and so he could get me a few things I needed if I was staying.
While he was gone, one of my OB’s partners who was on call stopped by to check in on me and said, has anyone explained to you what is happening. I said, not really, and she proceeded to give me my diagnosis of preeclampsia and explain that I would be in the hospital until I delivered. That conversation left me speechless; I remember gulping, and then when she said, do you have any questions, answering yes a million, but I don’t even know how to start.
When my husband returned, and I told him, he said, ‘You’re kidding, you made that up.’ My response that I assume went along with a look that could kill was, why would I kid about this, and I’m not creative enough to come up with this. I was admitted to a room where my blood pressure was checked every three hours, where doctors came in and out all day long, and where our first full day in the hospital was spent between an ultrasound and hearing a million numbers and odds and expectations from the doctors. Ultimately, I spent just over three weeks in that hospital room before delivering Colette, but it is where the initial thoughts for what would become Colette’s foundation started.
With me in the hospital, obviously, I was not going into work, and I did not have the kind of leave time to start my maternity leave, so to speak, in early May when I was not due until September 7. I took the first couple of days off so that I could figure out a plan and then was able to work out so that I did some work from my hospital bed with permission and encouragement from my medical team, who wanted me to rest but also wanted to distract me enough so that I did not lose my mind.
But, even with all of that, we pretty quickly lost my salary. Being blessed to be able to absorb that shock, I was so grateful but just kept thinking of how many families did not have that luxury to completely lose or substantially lose an income due to an emergency like ours. If you were struggling or if mom was the primary or a substantial breadwinner, could mom really step back from her job during bed rest or hospitalization to focus on her and her baby’s health? Why were the options only two-fold: either work and risk harm to mom and baby or don’t work and risk financial ruin, evictions, shutoffs, debt?
I told my husband after a day or two in the hospital that we needed to do something about this. He said, okay, but let’s just focus on you and baby first. I retorted with some sort of quip like, you know who you married, don’t change me, and we laughed.
But, during the time I was there, and then as Colette was born and spent her days in NICU, I kept thinking more about the financial burden these crises have on families.
It is about losing income and trying to stay afloat since the crisis does not mean bills and life go away, but it is also about enduring additional expenses ranging from childcare to increased commuting due to families having to go to hospitals further away for the appropriate level care to insurance premiums and deductibles.
If we know that parents being at their NICU baby’s bedside improves short- and long-term outcomes for babies, why were we not helping parents to be able to be there as often as possible? Why were we setting parents and babies up for failure just because they did not have the luxury of being at a certain income level? How was this fair? I wanted to do something to help these families who did not get to take their babies home right away, who visited their children in the hospital instead of going over to the crib or bassinette at home.
After we lost Colette, we had to plan her funeral, a task neither of us had ever done and one we never thought we would have to do for our child.
Very quickly, you have to make decisions that no parent should ever have to make, and those decisions determine how expensive the costs would be. If you want to bury your child, you have to pay for a casket and a cemetery plot. Can’t afford that? Then, you can do cremation, which funeral homes often do for free or just the cost of the license they need to cremate. But, in a time that is so traumatic and an experience of a child dying before a parent goes against everything in nature, how could families have to make these decisions that help with grieving based on finances? Why were we not providing families with options to memorialize their children in whatever way they needed to help them in a grief that is unimaginable to most?
In the midst of grief and with a rough idea in mind, I started to really think about these issues. I thought that I needed to do something to keep Colette’s memory and name alive, something that existed to say her life did not exist in vain, her life meant something, and as a result, she would do good for other families. I felt like while my life had been at risk, I had survived and that the reason why I had was to do this work that Colette could not do, but I could in her memory.
We launched The Colette Louise Tisdahl Foundation on September 7, 2018, just over three months after losing Colette, on her due date. Our original plan was to provide financial assistance to families who found themselves in need due to a crisis in one of what we call the three stages of Colette’s life—high-risk pregnancy or pregnancy complications, NICU stays, or loss. I found that while I had dreamed of flexibility in my new career path of running a foundation, I worked harder than I ever had before. I spent so much time getting the word out, answering questions, learning more statistics about just how many families find themselves in these situations. I learned that the average American family lives an unexpected $400 cost away from financial hardship, and I learned that $400 was not much when it came to any of these stages.
I also learned how dangerous pregnancy and childbirth had become, how it was safer for my mom to give birth than it is for me to give birth, and how as a country, we had the worst maternal mortality rate of any developed country. We were spending the most on healthcare and yet had the worst outcomes, and the situation was so much worse for women and babies of color.
Black women are three to four times more likely to die related to pregnancy than white women are, and this includes when we remove socioeconomic factors, meaning that a college-educated or higher black woman is still three times more likely to die than a white woman with less than a high school education.
I had always considered myself as a knowledgeable, socially aware woman, and if I had not known all of this, what did the average person know? And then, now knowing this, what could we do to enact change?
That knowledge and the corresponding what can we do led to us expanding to also cover education and advocacy in these areas. As a society, we need to know that this is happening in our world, and we need to respond appropriately. What happened to us was terrible, but it is far from unique as to what is happening to so many families across our nation every day.
So, what have we accomplished so far? Well, quite a lot. First, I cannot tell you how often I hear from people who say, ‘I just didn’t know this until you explained it,’ who have turned first to us to figure out how to support their loved ones or to learn about topics that are often scary to all of us, like the fact that 1 in 4 pregnancies (now, that’s pregnancies, not women) end in loss.
Secondly, we advocate for institutional changes like supporting the now re-introduced Momnibus package of bills, which provides for research and new programs to address maternal health for all moms, but with special attention on BIPOC. But, the biggest impact we see is in our financial assistance program.
To date, we have helped over 550 families in 39 states and given away more than $600,000 in financial assistance. Yes, those numbers are staggering, and it is so amazing to hear how many families know Colette’s name and story in ways that even if she had lived, they would not have known. But, what is even more real for me is how many of the families feel relief, how big of an impact even small dollars make to a family in crisis. We hear from families over and over again that say what meant the most to them was the fact that we communicated with them in a non-judgmental way, that we understand their family’s circumstances, that we are caring, and that we listened. I take those things to heart, and I push myself to ensure that we continue providing this to all the families we help.
I have always loved the African proverb, “It takes a village to raise a child.” But, I would add that what I have found is that it takes a village to grow a family, to help a family in crisis, and to survive trauma. We hope that Colette’s foundation and her inspiration and memory allow us to be a small part of many families’ villages.
Michelle, from The Momtourage
Michelle Valiukenas is the proud mom of her angel Sweet Pea, who she lost due to miscarriage, her angel daughter Colette Louise, and her only living child, her rainbow baby, Elliott Miguel. Michelle is the executive director of The Colette Louise Tisdahl Foundation, which financially assists families dealing with high-risk and complicated pregnancies, NICU stays, and loss. 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.
We thank Michelle for bravely sharing her journey with all of us and dedicating herself to helping so many families and for advocating and educating us on maternal and infant health issues. If you would like to learn more or to make a donation to The Colette Louise Tisdahl Foundation, please visit their website by clicking here.