Losing a baby shortly after birth is an experience that few can imagine. The intense heartache, coupled with the fact that it is such an unnatural thing for a child to die, leaves family and friends unable to know what to do and a couple isolated in their grief. So when Melissa Terrill and her husband Mike lost their daughter and then son in infancy, they decided to reach out and support parents like themselves. Melissa serves as the president of the nonprofit organization Mikayla’s Grace, which provides care and support to parents with babies in the NICU at area hospitals. While this journey began as a way to help others, Melissa says her work has been an integral part of her and her family’s healing process.
Madison Magazine: Can you describe your experience that led to founding Mikayla’s Grace?
Melissa Terrill: On June 13, 2010 our second child, Mikayla Grace, was born prematurely at 24 weeks 5 days. She lived in the Neonatal ICU at St. Mary’s hospital here in Madison for two days before she passed away. As most parents who experience the death of their baby, we were in complete shock at first. About six months after Mikayla died I started thinking about how I could give back to our community and help others who have recently been affected by the trauma of having a sick baby in the NICU or infant loss in local hospitals. We know first-hand how intense the heartache of losing a child is, and wish no one had to endure this experience, but we are grateful for those who have helped us and know how crucial this initial support in the hospital is.
MM: What did you hope to accomplish when you decided to start Mikayla’s Grace?
MT: Our initial goal was to donate Angel memory boxes that would be given to parents after the death of a baby in the hospital. When Mikayla died, St. Mary’s Hospital provided us with a very basic memory box, but there were many items that we wished we would have been given or things that would have been explained or discussed with us during our hospital stay. The brief moments parents spend with their babies before being discharged from the hospital are so precious and we wanted to ensure we could help make that a memorable time for parents.
We also wanted to provide care packages for parents who had a baby born before 30 weeks in the Neonatal ICU. Having a baby in the NICU is extremely stressful and we provide items that help the parents bond with their babies and make memories of their time in the NICU, as well as basic comfort items and education resources for the parents. Our donations were the first care packages of this type in either NICU in Madison.
MM: That sounds like a great way to begin helping parents. Are there any other care items that you bring to families?
MT: Last year we made our first donations to St. Mary’s of Babyloss Comfort Packs, which are a smaller version of our Angel Memory Boxes and are given to families who experience pregnancy loss prior to 16 weeks. Ten months after we lost Mikayla we experienced the loss of our son Chase Gabriel during pregnancy at 10 weeks due to Trisomy 22, and we left the hospital completely empty handed and received very little support. Chase’s loss convinced us that women who experienced earlier miscarriages deserved support as well.
MM: How has this organization helped your healing process?
MT: When we started Mikayla’s Grace I was simply looking for something to do to help others in a similar situation with a baby in the NICU or with infant loss, but being involved with this nonprofit has truly been one of the most healing parts of my grief journey. It has helped us keep the memory of our two babies alive and helped us connect with many parents in the area who have gone through the same circumstances. Through Mikayla’s Grace we have helped more families than we could have ever dreamed of. Our grief has truly elevated into something strong and beautiful, but without each and every one of our supporters it would not be possible to help all those that we do. I know that many volunteers say that the organization provides something tangible for the memory of their baby, which can be very helpful in their healing.
MM: How does the Forever in Our Hearts Remembrance Day event correspond with Mikayla’s Grace?
MT: The main goal of the Remembrance Day event is to help offer support and companionship to families who have lost babies. We hope that this day offers an opportunity to gather in memory of all the babies gone too soon, and to speak their names. When you lose a child, there are a lifetime of memories that were never made but this event offers an opportunity to do something in honor of these babies. The event was not started as a fundraiser however it has become one of our main fundraisers, mainly through the support of our community businesses who sponsor the event. All proceeds from the event will go directly back to the community to support donations of the Angel Memory Boxes, Baby Loss Comfort Packages, and NICU care packages to local hospitals.
MM: Are there any other goals for the Remembrance Day event?
MT: One of our goals for the event is to increase awareness of pregnancy and infant loss for the month of October. One in four pregnancies ends in loss, but it is still a topic that is not often discussed. Community members can help increase awareness by inviting family and friends to the Remembrance Day event, sharing the event with others, hanging posters about the event in the community, and by wearing pink/blue ribbons during the month of October.
MM: What other ways can the community help your organization and the families it serves year-round?
MT: We are always looking for volunteers and there are several ways to get involved! All monetary donations go directly toward providing comfort and support to families with a baby in the NICU and bereaved families who have experienced infant loss. Donations can be made in someone’s name, and for each $50 donation a memory box or NICU care package will be made in honor of that individual and a card will be included with the donated item. We are also always accepting donations of handmade items such as blankets, baby gowns, baby hats and baby booties. The details of items needed and sizes preferred can be found on our webpage.
MM: In addition to providing support to families, what are some other focus points of Mikayla’s Grace in the future?
MT: Our goal is to raise enough funds each year to continue providing donations for many years to come. There are over 100 infants that die at the two largest Madison area hospitals alone each year. Over 400 women experience a miscarriage loss at these hospitals, and another 100 infants are admitted to the NICU after being born before 29 weeks. Our goal is to meet these needs each year, and if we gain enough support we hope to reach out to even more hospitals. We are working to expand our donations to include the NICU at the American Family Children’s Hospital in 2014 as well as working with parent volunteers in their community to offer support for rural hospitals in Janesville and Darlington. We hope that someday no family will have to leave a hospital without a memory box and memories of their baby.