By Michelle Valiukenas, Co-Founder and Executive Director, The Colette Louise Tisdahl Foundation

Every day, I get questions about the work that we do, whether someone qualifies for our programs, whether we are the best fit for a partnership, what our mission is.  I decided that for today’s Friday Five, I would do Five Things to Know about The Colette Louise Tisdahl Foundation.

We have been through a lot in our journey to parenthood.  We suffered from infertility and did so many treatments and attempts.  We have had failed IUIs, failed IVFs, two pregnancies from IVF.  We have been through three egg retrievals, four IVF cycles, and then another cycle with our gestational carrier that resulted in our only living child, Elliott.

We have known loss, starting from failed cycle after cycle where we were not pregnant.  We then got pregnant, celebrated and cheered only to miscarry Sweet Pea a few weeks later in a two-part miscarriage.  We got pregnant with Colette, I ended up hospitalized with preeclampsia, delivered her via emergency c-section at 24 weeks and 5 days, she lived in the NICU for nine days, and then we lost her.

All of this is to say we have known joy, terror, panic, loss, fear, worry, concern, and more loss.  We have ridden several rollercoasters and we still live with grief over our losses and also joy in our rainbow baby.  We have had days where I feared we would never have a child, that our children would always die, that we have questioned whether we were worthy of having healthy children. We have had and continue to have days where the grief feels all-consuming.  We have had the life of a NICU parent where everything could change by the minute and where days could start off terribly and end wonderfully and vice versa.

We know the multitude of emotions that parents come to us with because we have known those emotions too.  We know how tough it is to balance excitement and joy with complete fear and terror.  We know how much guilt you can have, how much time you can spend wondering about how if you had done this one thing differently.  So, we understand, we get where parents are coming from, and we meet every family where they are at, to help as much as we possibly can and to be another resource, another tool in their arsenal.

2. We are not just a NICU organization…

…Or a loss organization, or a pregnancy organization.  We set up this organization strategically to encapsulate what we view as the three stages of Colette’s life: (1) high-risk pregnancies or pregnancies with complications; (2) NICU stays; and (3) loss.  We help families in all three of these categories, although NICU families reach out the most due to the extended stays and needs these families have.  But, we know how meaningful it is to have a proper memorial for a loss, how much of a toll a difficult pregnancy can take, and how much financial problems during a pregnancy can cause undue stress on mom and baby.  We want to help families in all these categories.

3. We are a national organization.

We are based in the Chicagoland area and are both originally from here, but we know that these problems do not discriminate—they affect people in every demographic, at every socioeconomic status, and in every area of the country.  So, we help families throughout the country.  So far, we have helped families in 39 states and want to help in all 50 states.  At this time, our top states in terms of families helped are Illinois, Iowa, North Carolina, Pennsylvania, and Texas.

4. We look at each family and each application on a case-by-case basis.

We were very intentional in how we set up this organization.  We knew that while some families might benefit from these certain things, other families might need something else entirely.  So we set it up so that we could examine each case and make decisions based on their needs and our capacity.  We have some general guidelines of course and a few priorities, but we rely very much on our clients and their social workers, case managers, etc. to paint us a picture of what they need and how we can help.

Interested families apply for assistance on our website, www.colettelouise.com.  We also ask their social worker or other healthcare professional to provide a verification of high-risk pregnancy or pregnancy complication, NICU stay, or loss.  Once we have both, we review applications weekly and then send a decision via email. 

For our application review, our primary focus is on families who are living at 300% of the federal poverty level or below.  For families who are above that level, then we compare income from the previous year to this year.  If there is a decrease in income of 25% or more, we also establish that there is financial need.  After that, decisions can get tough, based on what we have available in funding as well as what the family needs.  We also rely on our social worker relationships to tell us if there are special circumstances that we should take into consideration.

Our priorities are to help achieve healthy pregnancies and remove as much stress as possible for mom to focus on maintaining the healthiest pregnancy possible; to allow families to have a burial or cremation of their loss; and then to get parents to their children in the NICU as often as possible.  This has meant we have paid everything from rent/mortgage to car payments to car repairs to gas gift cards to Lyft rides to utilities to credit card bills to funeral home expenses and lots more in between.

5. We do not know everything

That’s where you come in!  We have learned so much from social workers, families we have helped, families who have supported us, and fellow professionals in this field, and continue to learn more every day.  When we started the organization, we said we helped families due to pregnancy and infant loss and felt like that was sufficient.  Then, we had someone ask us if we helped in cases of stillbirth.  I said, of course we do and the other person said, well, stillbirth is not pregnancy loss and it is not infant loss.  Never intending to do so, we had alienated a group of people.  So, we changed it to loss so as not to exclude anyone.

Similarly, because of our experience, we said we helped families dealing with premature birth, but what we learned is that the NICU involves full-term babies as well.  Again, we learned something and reacted to it by changing it to NICU stays and not excluding others.

So we invite you to reach out with questions, with suggestions, and with your own stories relating to maternal and infant health, difficult pregnancies, NICU stays, parenting, loss, and much more.  We learn so much from you and would love to hear from you.  You can write your own Friday Five, suggest a topic, reach out with an educational idea/topic, or just give us suggestions on how to better help families.  The door is open for you anytime!

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