Community Partner Spotlight: The Colette Louise Tisdahl Foundation
pumpspotting is proud to partner with non-profits and community organizations who share our mission of helping new families meet their baby-feeding goals and feel supported throughout their journeys.
This week we wanted to spotlight our newest partner, the Colette Louise Tisdahl Foundation. This foundation is named in honor of baby Colette, who was born prematurely and passed away after nine days of life. It provides financial support to families experiencing a high-risk pregnancy, a NICU stay or loss. We were honored to meet Colette’s mother, Michelle Valiukenas, and to learn more about the foundation she started.
Can you tell us what inspired you to start the Colette Louise Tisdahl Foundation?
The inspiration really came from Colette herself. During my pregnancy with her, I was hospitalized at 21 weeks after a standard OB appointment led to a diagnosis of severe preeclampsia and told I would be hospitalized until I delivered. I had an early evening appointment and remember leaving work to go to the appointment, planning to return the next day as usual, and instead, I was scrambling to make sure things were covered, my team was still supported and running, and then dealing with going from a two-income household to a one-income household. While we were blessed to be in a financial position of being able to handle that, I thought of so many families at different income levels who would not be able to survive. I knew that I had to do something and the issue kept gnawing at me throughout my three-week hospitalization, during Colette’s short life in the NICU, and after we lost her. I was not a doctor, a nurse, medicine was not a way I could help other families who experience this, but recognizing the financial strain and need and then doing something about it was what I could do.
What kinds of families and experiences does your foundation support?
We support families nationwide (currently we have hit 39 states so far) who are in a financial crisis or strain due to one of three situations: (1) high-risk pregnancy or pregnancy with complications; (2) NICU stay; and (3) loss. We set this up to include families in what we refer to as the three stages of Colette’s life. These situations often mean a loss of income, whether partially or fully, while at the same time, an increase in costs, whether due to commuting, need for childcare, medical bills, etc. We strive to review every application and consider every family on an individual basis to see how we can best help and support the family financially while also working within our resources to help as many families as possible. Ultimately, we know that stress has negative effects on pregnancies, on NICU patients, and on grieving families and financial stress is a huge burden. Our goal is to improve outcomes and we do that through financial assistance, but also education and advocacy.
What are common hurdles or barriers parents face when they experience pregnancy complications, a NICu stay, stillbirth or infant loss?
The biggest issue we see is that in almost all cases, it is the surprise, the feeling of everything was fine until it was not. I visualize a picture I once saw of someone standing on the beach, happy and carefree, while behind them, a giant wave was forming. Families don’t see the giant wave; as a society, we do not go into pregnancies or childbirth or our children’s infancies expecting things to go wrong, so when they do, they really turn our lives upside down. In a typical pregnancy, we plan for what happens when baby is born, when baby comes home, but what happens for parents who experience the surprise is that (1) it may have happened early enough that there was no plan or (2) the plan they had is not feasible if you add in the difficulties brought on by complications, by premature birth, by need for a NICU stay, by loss. Then, at the same time as having no plan, usually not enough or no financial cushion, parents are taking on more expenses. For example, on average, our families have a 57-mile one-way trip to the NICU. The costs brought on by that commute are substantial and can take a hit on anyone, but especially a family that may have experienced or currently experiencing a loss of income.
Additionally, these topics are still considered taboo by many. As a society, we still view pregnancy and childbirth and babies as magical and wonderful. While that is very true, we do not talk about all the things that can go wrong. Currently, as a country, we are failing moms and babies. We have a maternal health crisis of epic proportions, with the U.S. having the highest maternal mortality rate of any industrialized country, and numbers that are even worse for mothers of color. We do not properly educate anyone really about what is normal in pregnancy and what is a warning sign of a problem, with most things being dismissed as oh, that’s just pregnancy. Parents who find themselves in these situations are surprised by the situation, but also about how this could happen and what this all means. And for all the money we spend on healthcare as a nation and the technological advances we have made, often there are no answers.
How can people access support from your foundation? Where can people go to make a donation?
Families in need of help can fill out an application on our website, www.colettelouise.com. They also need to have a third party fill out a verification. The verification is often filled out by a hospital social worker, but can also be filled out by another healthcare provider. The verification can be submitted through an online form on our website, via letter or email, or through official paperwork, such as a death certificate. Once we have both pieces, we review applications once a week and then email with a decision. If approved, we make payments directly to service providers.
To make a donation, you can visit our website at www.colettelouise.com/donate. We appreciate all donations because they really help increase our capacity to help families. The number of families we help and the degree to which we can help each family is restricted only by our financial resources, so if we have more funds, we can help more families and increase the help provided to individual families.
What are some systemic changes you hope to see in the future to support this population?
Wow, this is a great question and one which I could write about for days. Ultimately, my big, huge, scary goal is that we are not needed, that families do not experience these issues often enough to warrant seeking help and that when they do experience them, there are enough other resources for them. I do not expect to see this in my lifetime, but I will dedicate my energy towards achieving that goal. We need to address racial inequality and implicit bias in medical care. We need to take what moms are saying seriously and act accordingly, but we need to start this before someone is pregnant by intervening and controlling medical issues like hypertension, diabetes, and many more long before someone is getting pregnant. We need to have paid family leave so that someone ordered to bed rest can actually take that time to protect themselves and their child, for a parent to be able to be present and active during a child’s NICU stay, and for someone grieving to have the time and space to begin the healing process. We need to stop setting up moms and babies for failure and to instead empower them with knowledge and resources about their health preconception, during pregnancy, and postpartum. We need to talk open and honestly about these topics. I am so glad to be part of a generation of women who are sharing their true motherhood stories and not the romanticized, fairy-tale versions we have heard for so long. At the end of the day, we need to realize that these issues are not going away and in fact are getting worse. It is not just a women’s problem, it is not just a black problem, it is a societal problem and we need to work together on all fronts to address these issues.
Is there anything else you’d like to share with our readers?
Be kind. We don’t always know what others are experiencing at the moment we encounter them, so be kind.
Be there. If you know someone is dealing with any of these situations, show up and be willing to let them take the lead, to say what they need to say, and to not have to answer questions they don’t want to answer, to know they are supported and loved. Experiencing any of these situations feels so isolating and the simple act of a friend sending a text with a heart emoji or offering to do your laundry or drop off dinner is immeasurable.
Speak up and share your story. For so long, we have hidden these stories of loss, of pain, of grief, only bringing them out when other members of our community have had similar experiences. But, we cannot hide any longer, people need to know what can happen so that the isolation does not feel so heavy and so that we can be reminded of our need for change and solutions.
We collaborate with organizations like this to provide free access to the app for the community they serve. If you would like to learn more about our Community Partner Program, please visit: www.pumpspotting.com/partners