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.
Article on WKOW.com Oct 05, 2013
FITCHBURG (WKOW) — Families gathered to remember the lives lost too soon.
The third annual “Forever in Our Hearts Remembrance Day” honors parents who have lost babies and those whose infants are fighting for their lives in the hospital.
The event, put on by Mikayla’s Grace, recognizes National Pregnancy and Infant Loss Awareness month. Mikayla’s Grace is a non-profit that supports families who’ve lost babies or have a child in the NICU, by sending care packages and memory boxes.
Article in Brava Magazine, May 2012
Helping families remember the littlest lives
By Elishah Oesch
Losing a baby is heartbreaking for any family. But sadly, it happens more often than many realize. In fact, one in four mothers experiences a miscarriage in her lifetime, and every year in the U.S. approximately two million women experience pregnancy loss of some kind. But those are just facts. One local woman knows first-hand the sorrow that comes with losing not one, but two babies.
Melissa Terrill lost her baby girl, Mikayla, in June of 2010. Mikayla was born prematurely at 24 weeks, six days. She weighed a mere 1 pound, 5.5 ounces; just small enough to fit in the palm of her parents’ hands. Mikayla lived for only two days, and then became what her mother now affectionately calls an angel.
Terrill was devastated by the loss. She describes it as “the most shocking thing I think a person can experience.” But some time later, Terrill and her husband were once again confronted with the pain of losing their son, Chase, after a miscarriage. The loss of a small life, both born or unborn, is something Terrill doesn’t distinguish from one another. “The feelings you experience from both of those [tragedies] are actually very similar,” she explains.
After some time for reflection, and help from family, faith, and friends, Terrill decided to turn her grief into action. Terrill looked back at her own experience in her hospital’s NICU—the neonatal intensive care unit for newborns—and realized that despite the level of care they received, there were many things she needed and questions she had that went unattended or unanswered. So she set out to change that for other mothers having the same experience and founded the nonprofit organization, Mikayla’s Grace.
Dedicated to providing NICU packages for families of premature babies and Angel Memory Boxes to families that lose a baby at the hospital, it’s Terrill’s way of easing the pain and fear that accompanies either situation.
The NICU packages offer items for both parents and baby, including blankets, stuffed bears, a camera, and creature comforts for mom such as lotion. She hopes to one day include useful items such as restaurant gift cards and gas cards for parents who have to make daily treks to the hospital.
The Angel Memory Boxes include mementos such as a candle and blanket or a poem and a memory book. It’s a somber package she puts together, knowing how much these things can mean to a family in need. Terrill is also careful to add one special addition that offers a way for parents to always hang on to a special part of their baby.
“[It’s] a little 3-D casting kit to make 3-D images of your baby’s hands and feet,” Terrill describes.
With each kit, Terrill has one goal: “[To] make sure that no parent leaves the hospital without having those things to remember their babies by,” she says.
Each packet also contains information that Terrill knows is necessary after the loss of a child: Pamphlets on what to do, where to find support and how to plan a funeral should a baby die.
“You never think that you’re going to have to plan a funeral. How do you go through that process?” Terrill asks.
Mikayla’s Grace helps answer those questions and, if nothing else, provides the information to help bereaved parents through the unimaginable.
Terrill says nothing can ever ease the pain of losing a baby, including her own, but through Mikayla’s Grace, she’s doing what she can to help others going through what she has.
“Holding onto those memories and having those memories like a blanket and pictures…you start to realize how important those things are,” she says.
Elishah Oesch is co-anchor of WKOW 27’s Wake Up Wisconsin. Find more about Terrill on the Someone You Should Know page at wkow.com.
May 14, 2012 9:00 am • DOUG ERICKSON | firstname.lastname@example.org | 608-252-6149
Jonathan Terrill, 3, rides in a hammock swing in the backyard of his home in McFarland. His parents, Melissa Terrill, pictured, and Mike Terrill, started Mikayla’s Grace, a nonprofit organization that provides care packages and memory boxes to parents with children in neo-natal intensive care units. The charity is named after Jonathan’s sister, who lived just 36 hours.
Mikayla Grace Terrill was born three months Premature at St. Mary’s Hospital in Madison — a micro-preemie — and weighed just 1 pound, 5.5 ounces. She lived 36 hours.
For her parents, Mike and Melissa Terrill, leaving the hospital without her was almost too much.
“When you get pregnant, you don’t expect to come home without a child,” said Melissa Terrill, 33, of McFarland. “It was just so shocking.”
That was in June of 2010. One year later, the couple baked strawberry cupcakes for the nurses in the neo-natal intensive care unit at St. Mary’s.
They also donated to the hospital 66 books, 28 gowns with matching booties and hats, 20 care packages for parents with babies in the intensive care unit, and 12 “angel memory boxes” to help other parents remember the children who would not be coming home with them.
With the donations, a charity was born. Mikayla’s Grace, the name the couple chose for the nonprofit organization, has now given hundreds of items to the neo-natal intensive care units at St. Mary’s and Meriter hospitals in Madison. The organization hopes to branch out to hospitals outside of Madison.
The effort has given the couple a concrete way to help other families while honoring Mikayla’s memory, said Mike Terrill, 35, a recruiter for the pharmaceutical industry. It also has given friends and family members a way to broach a very difficult subject, said Melissa Terrill, an optometrist.
“It’s such an unnatural thing for a child to die that people just don’t know what to do,” she said. “Talking about it is really challenging, so it can become isolating. This helped people acknowledge the loss.”
Mikayla was the couple’s second child. Jonathan, now almost 4, arrived after a problem-free pregnancy.
Nine months after Mikayla’s death, the couple learned they were pregnant with their third child. A routine ultrasound found the baby did not have a heartbeat, and Melissa underwent a surgical procedure to end the pregnancy at 10 weeks. The couple named the boy Chase Gabriel.
All of those experiences now inform the work they do through Mikayla’s Grace. Each care package includes, among other items, a disposable camera, lip balm, hand lotion, a scrapbook specifically for preemies and a journal. The latter would have been especially helpful during Mikayla’s brief life, Mike Terrill said. He was often scrambling for scratch paper to record things doctors or nurses said about Mikayla so he could take the information back to his wife, who was hospitalized in a different room.
“It all happens so suddenly,” he said. “These were just some of the things it would have been nice to have with us.”
Drawing on feedback from other bereaved parents, Melissa Terrill created two pamphlets for the memory boxes — “What I wish someone would have told me before I left the hospital” and “Making funeral/cremation arrangements.”
Using items in the memory box, parents can make a 3D impression of their child’s hands and feet and store a lock of hair in a keepsake tin. The box also includes a teddy bear (for siblings), special burial clothes, a “certificate of life,” a votive candle and numerous resources for grieving parents.
“Grieving families don’t have the energy or the time to do a lot of research,” said Chantel Schneeberg, a nurse and perinatal bereavement coordinator at St. Mary’s. “What Mikayla’s Grace has done is taken all that time and energy and done the research. It really has made it a lot easier for families incurring the loss.”
Decades ago, parents rarely got to see or spend time with a baby who died in a hospital, the thought being that developing a bond with the child might make the loss seem even greater, Schneeberg said.
That approach has evolved over time to one in which hospitals now encourage families to keep the baby in the room as long as they want and to make those special memories.
“We tell parents, ‘Nothing you ask is abnormal,’” said Laura Ziebarth, a clinical nurse specialist in the neo-natal intensive care unit at St. Mary’s.
Some parents have wanted to bathe their deceased child or take the child on a walk in the hospital’s garden, Ziebarth said. One couple put their child in a car seat, perhaps because it was a special gift from a family member, she said.
Last October, Dan and Kaylan Pesature’s son Jackson arrived stillborn at 32 weeks at St. Mary’s. In photos of him, he is dressed in outfits provided through Mikayla’s Grace.
“It was just such a comfort in that moment to get that angel memory box and to know other people had experienced what we were going through and had gotten through it,” said Kaylan Pesature, 28, of Madison.
The Pesatures now are among the dozens of volunteers who donate financially to Mikayla’s Grace and help put together care packages and memory boxes for others.
Each memory box costs about $45 and each care package about $30, Melissa Terrill said. Money comes from donations and fundraisers.
The organization also sponsors an annual event called Forever in Our Hearts Remembrance Day to honor families who have lost babies through pregnancy, stillbirth or early infancy. This year’s event is planned for Oct. 13.
The Terrills are now pregnant with their fourth child, due May 30, and the pregnancy has gone well. Their feelings are more cautious this time but also deeper and richer.
“I’m just much more aware of every moment,” Melissa Terrill said. “Every moment becomes part of the special memories of this pregnancy.”
Posted: May 02, 2012 3:47 AM CDT
By Elishah Oesch
MADISON (WKOW) — Losing a baby is something no parent is prepared for in life. Sadly, one local couple experienced that tragedy twice. But, they’ve turned their grief into action, by helping others going through the same thing. Elishah Oesch introduces us to this month’s Jefferson Award winners Melissa and Mike Terrill, the founders of Mikayla’s Grace.
Melissa says, “It’s probably the most shocking thing, I think you can experience.” Mike says, “you go from this normal existence where everything is normal and the next minute you’re experiencing a very scary birth of your child.”
Parents Mike and Melissa Terrill have experienced something no one expects. The premature birth and death of their baby daughter, Mikayla.
Mike says, “it was something you’re not supposed to go through.”
Mikayla was born at 24 weeks, 6 days. She weighed a mere one pound, five point five ounces. She was just small enough to fit in her father’s hands. She lived only two days, in June of 2010.
Melissa says, “she was just a tiny little thing but perfect in every other way.” Some time later Melissa and Mike experienced another tragedy. A miscarriage of their son, Chase.
Melissa says, “that opened our eyes to a whole different type of loss.” A loss that was no less great than the first. In fact, Melissa says, “the first few weeks after loosing him were just as difficult for me as when we lost Mikayla.”
After some time and continued grieving Melissa and Mike realized they were not alone in their experiences. In fact, one in four mothers have a miscarriage. Every year, approximately two million women experience pregnancy loss.
Melissa says, “I realized that there was a lot more that can be done for families as well to help them through.” Together they made a life changing decision. They started what is now a growing volunteer organization, Mikayla’s Grace. They provide memory boxes to parents who loose a child, and NICU packages for parents who have a baby 30 weeks or under at the local hospitals.
Melissa says, “this is what our NICU packages look like. They come in this bag.”
All the items, go to families in the NICU. One of the most important things they get is information on what to do next should their child pass away. Melissa says, “also just things to help them make memories with their babies.”
As for the parents that do loose a baby, the Angel Memory Boxes are provided. They include everything from a candle, to blankets, to a poem, and a memory book. As well as, Melissa’s favorite part, little 3-D casting kits. You can make 3-d images of the baby’s hands and feet.
They’re all small things, but very important for bereaved parents and families. Melissa says, “having those memories and having that blanket she used and the pictures we took. You start to realize how important those thing really are.”
If you’re interested in Mikayla’s Grace, they do accept donations. You can contact them via their website at www.mikaylasgrace.com You can also go to their Facebook page atwww.facebook.com/mikaylasgrace
Posted on April 4, 2012 on Meriter’s blog
Meriter would like to thank Mikayla’s Grace for their generous donation of NICU care packages and Angel Memory boxes for our NICU families. Mikayla’s Grace was started by Mike and Melissa Terrill and was initially inspired by their second child who was born too soon at 24 weeks, and lived a short 36 hours. The couple also experienced another loss of their son Chase Gabriel at 10 weeks. They hope to expand the mission of Mikayla’s Grace someday to include support for families experiencing early miscarriages.
Mikayla’s Grace is their way of giving back to the community, and keeping their children’s spirits and memories alive, while helping other families. They hope to give comfort and support to parents who find themselves in the stressful situation they were in. Their NICU care packages are intended to help parents create memories of their time in the NICU and make their lives a little easier.
Meriter received 50 NICU care packages including a Preemie Primer book, journal, scrapbook, camera, book, teddy bear, hand lotion, lip balm, and additional information. They also donated 30 Angel Memory bags containing a sympathy card, pamphlets from local bereaved parents, teddy bear, hand/foot molds to make 3D impressions of baby’s hand and feet, special burial gowns with matching hat and booties, knit blanket, special keepsakes, book “Strong and Tender: A guide for Father’s whose Baby has died” and additional resources.
Interested in helping Mikayla’s Grace?Even a small donation can make a difference for the parents they serve. All monetary donations go directly toward providing comfort and support to families with a baby in the NICU and bereaved families who’ve experienced infant loss.
If you would like to support Mikayla’s Grace, visit their website at mikaylasgrace.com.
Posted: Mar 17, 2012 12:57 PM CDT
By Jennifer Kliese
MCFARLAND (WKOW) — An area non-profit group is putting together care packages for families with premature newborns.
It’s called Mikayla’s Grace–started by a couple who lost their baby after just two days.
On Saturday, more than 30 people gathered at the Terrills’ home in McFarland to put together care packages they’ll deliver to St. Mary’s and Meriter hospitals in the next few weeks. The gifts will go to families who have lost a baby or those with a baby in the NICU.
“Items just for the parents for their healing journey, just for those who lose their babies as well and for those who have a baby in the NICU, it’s just items to help make that parents’ NICU stay a little less stressful,” says Melissa Terrill, founder of the organization.
Terrill says these families often don’t get enough help during what can be a tough time. Each care package costs $30-$40, and the organization relies solely on donations.
For more information on how you can donate to the project, visit the Mikayla’s Gracewebsite.
The group is currently hosting a flower bulb fundraiser. Click here to purchase bulbs online for spring planting. 50% of profits go to Mikayla’s Grace.
Posted: Mar 10, 2012 9:42 AM CST
By Katie Priebe
MADISON (WKOW) – An organization formed to support families with a baby in the NICU is working on a Flower Fundraiser to raise awareness.
Mikayla’s Grace provides NICU care packages and angel memory boxes. The organization was started in honor of Mikayla Grace, a baby who died after she was born prematurely June 13, 2010.
Mikayla’s Grace reaches out to those who have been affected by the trauma of having a sick baby in the NICU.
More information can be found athttp://www.flowerpowerfundraising.com/campaign?campaign_id=9050 and www.mikaylasgrace.com.
Submitted by Scott Beedy, Channel 3000 Community Editor
Friday, June 24th, 2011, 3:22pm
Last June, Melissa and Mike Terrill had an experience that changed them forever. The couple was busy preparing for their second child, but what they weren’t expecting was for their child to be born so early.
Melissa gave birth on June 13 to Mikayla Grace, who weighed just more than 1.5 pounds, at just 24 weeks. Mikayla died 36 hours later. The Terrill’s have dealt with their grief, in part, by helping others.
“It is our hope to give parents leaving the hospital without their babies something to fill their empty arms,” they said. “Leaving the hospital without Mikayla was one of the worst feelings in the world. The keepsakes we received while Mikayla was in the NICU are few, but will be treasured for a lifetime. We would like to supplement this with things that have brought us comfort and resources that we have found on our own. We want to ensure that other parents will have the opportunity to have special ways to remember their babies gone too soon.”
Along with several other parents in the area that have lost children, the Terrill’s created Mikayla’s Grace, a nonprofit that provides care packages and support for families that lose babies.
Recently they made a special donation to St. Mary’s Hospital to help those in need.
For more information on MIkayla’s Grace or to help out, visit: www.mikaylasgrace.com.
Professional Photographers Volunteer With Nonprofit Group
Updated: 1:57 pm CDT May 5, 2011
MADISON, Wis. — A local couple is celebrating their daughter’s life with them, no matter how short that life was.
Melissa and Mike Terrill found comfort working with Now I Lay Me Down to Sleep, an organization made up of volunteer professional photographers who capture a fleeting moment between parent and child, helping families heal after the death of a child.
“The love that a child gives and shares is just something that you don’t know until you have it,” Melissa Terrill said. “We’ve never really had much loss in our lives. Even though you know these things happen to other people, you sort of think this is never going to happen to you.”
During a normal summer day last June, the Terrills were out strawberry picking when Melissa started having contractions. She was only 24 weeks pregnant.
“When the doctor said you’re 5 centimeters dilated, we need to go in for an emergency c-section. At that point I didn’t know if a baby could survive at that age,” Melissa Terrill said.
Their daughter, Mikayla, was born at St. Mary’s Hospital weighing less than 1.5 pounds, and more than three months premature. She lived for 36 hours.
“People try and equate the amount of time they were with you with how much you grieve or how much intensity the loss is, and it’s just not that way,” Mike Terrill said.
The Terrills found comfort in an unexpected source — photos of their daughter.
“It did feel a little strange to be taking pictures of Mikayla because she’d actually passed away at that point,” Melissa Terrill said. “We knew right away these were the only moments with Mikayla, or at least with her body, and we wanted to have those pictures as memories.”
That’s where Danielle Bradley comes in. She is one of more than 2,000 professional photographers nationwide who volunteer for the nonprofit group Now I Lay Me Down to Sleep.
“I actually go to the baby, wherever the baby’s at with the mom, and I immediately ask what the name is and is he or she named after anybody,” Bradley said.
“One of the things I have a distinct memory of is (Bradley) making us feel like Mikayla was the most beautiful baby she had ever seen,” Melissa Terrill said.
Bradley’s business is called First Moments, but she said these “only moments” are truly irreplaceable.
“They are still people. It doesn’t matter what age they are, what gestational age, they’re someone’s child and embracing that and I think making it more of a positive experience for a mom is important,” Bradley said.
It’s an experience that Melissa Terrill said she holds on to with all her heart.
“These are pictures I’m just as proud to show off as I am pictures of my son Jonathan,” Melissa Terrill said. “I find the photos very therapeutic to have. I’ve made an entire scrapbook for her with those photos and I use them on my blog, and we have them hung around our house. Those dreams that we have for our family and for Mikayla do not go away just because she’s not here anymore.”
The Terrills are still thinking about Mikayla, and they’re not alone in their grief. More than 100 infants die every year at St. Mary’s and Meriter hospitals.
The nurse at St. Mary’s Hospital who handles these losses encourages families to take part.
“That’s what we’re giving them, the opportunity to actually parent their child by taking pictures, by bathing, dressing, all those things,” said Chantel Schneeberg, St. Mary’s Hospital perinatal loss coordinator.
The Terrills have a website in honor of Mikayla at www.mikaylasgraceblog.blogspot.com, and the funds they raise through donations are for other parents who end up leaving the hospital without a baby in their arms.
Twenty-four weeks gestation, when Mikayla was born, is typically the earliest babies can survive, stand a chance of surviving, according to experts, and it’s thanks to research and fundraising through organizations like the March of Dimes.
The March For Babies Walk is one of those efforts, and it’s being held Saturday. It will start at 9 a.m. on the Martin Luther King side of the Capitol square.