Needs of the Heart Jessie’s Heart provides financial support to those needing assistance with transportation, lodging, food, daycare, and other unexpected expenses. We believe that by reducing the family’s financial burdens, parents can focus on the care and wellbeing of their child.
We support the multidisciplinary collaboration of Social Workers, Child Life Specialists, Pediatric Psychologists, and Chaplains in the support of CHD families.
Desires of the Heart
We fulfill dreams for cardiac children. Working with the hospital’s care team, we learn about the children’s wishes and gift them through Jessie’s Heart’s Desires of the Heart program.
Jessie’s Heart captures the stories of families whose kids have been diagnosed with heart conditions. A personal book is designed for them that displays family pictures and stories of their emotional journey.
16-month-old Rowan was born with 4 heart defects.
She has already undergone three open heart surgeries, with the first one on her third day of life. She received a bi-ventricular repair in 2017 and is now living at a normal oxygenation. Her conduit will need to be replaced as she grows and will be under a lifetime of medical surveillance.
Rowan’s parents are happy to share that she lives a normal and very happy life now as a sassy little lady. Her absolute favorite animal is a horse, and she loves the rocking horse gifted by Jessie’s Heart
Letters to Sammy
Sammy’s story began before she was born. The doctors noticed a narrowing of the left ventricle of her heart. She was born at 35 weeks, and as she was getting ready to go home for the first time, the echocardiogram showed her heart had become severely enlarged She has left ventricular hypertrophic cardiomyopathy, a condition in which the heart muscle becomes abnormally thick. Her parents were told Sammy would need a heart transplant. That was the only fix. Miraculously, seven weeks later they got the call. Sammy underwent her first heart transplant before she was 2 months old. Although her life was filled with doctor’s appointments, she was able to experience everything a healthy child does – she walked, talked, went to school, played sports, and had many friends. Then, at the end of her junior year in high school, Sammy’s heart once again gave out. This time, she waited only five days, before she was given the gift of life. Sammy finished high school, enrolled in Community College, and started her first job. She also decided she wanted to share her story and become an active volunteer and spokesperson for the American Heart Association. On February 27, 2016, at the age of 23, Sammy lost her battle with heart disease. We honor and remember Sammy for her infectious spirit, positive attitude, bravery, and advocacy for those battling heart disease.
A Story from the Heart
I remember walking through the doors of Children’s Hospital, with an overwhelming sense of peace. I knew that we were in the right place to take care of our girl.
On October 20, 2017 little Miss Madison Brooke Speakman entered the world with as much sass as you would expect to come from a Speakman girl. She had her first open heart surgery a week later and we had our fair share of ups and downs. A round of ECMO because of septic shock, a couple of blood clots in
her neck and more than a handful of swelling issues. Some would call it a roller coaster, I’d call it skydiving without a parachute. After 41 days of fighting, our little Madi B lost her battle with CHD.
Without the help of foundations like Jessie’s Heart or the amazing people
who make up The Heart Institute Wellness Program our journey would be far more difficult.
I remember feeling ashamed about our financial situation and afraid to ask for help because I didn’t want to be judged. I remember our case worker Melissa telling me that she’s seen a situation like ours cripple a six-figure bank account and that there’s nothing wrong with asking for help. I broke down in her hospital room on the last few days of her life, asking how I was going to bury my baby with $33 in the bank account. We were given gas cards and financial support, not to mention the shoulders to cry on.
We have been supported continuously; some people think that the hospital support stops the minute you walk out those doors and that’s far from the truth. The bereavement program has been an integral part of our grieving process and I love that we are still thought of even though we’re not patients anymore. Through the bereavement program and their 6-week grief group, I have met some of the most amazing bereaved parents. Even though our group ended, we still meet every month and are going on a cruise together in January. It is because of the hospital that we are able to grieve with grace.
On behalf of my family and future families, thank you for donating to Jessie’s Heart. Without your donations, families like mine would not be able to focus their efforts on their children.
It is hard to put into words how much Jessie’s Heart financial generosity means to our families at Children’s Hospital Colorado.
Our families tell us that they never thought they would need to come to the Heart Institute with their child and never could have imagined that their child would be diagnosed with a cardiac defect. We meet our families when they are in extreme shock, disbelief, and completely devastated. Their lives are immediately turned around and while they are processing their child’s illness, they need to figure out how life is going to work.
Our families are not only figuring out how they are going to sit in the CICU with their child in heart failure, while they speak to providers to complete a transplant evaluation, but they are trying to figure out how they are going to pay for gas to return home to see their other children. They are trying to figure out how they can pay for rent, when they have missed weeks of work and are on unpaid leave. They are trying to figure out how they will afford meals in the cafeteria every day. They are trying to figure out how they will pay for food, lodging and transportation, to travel to their child’s multiple clinic visits.
It is hard to describe the look on a parents’ face when we tell them that we are able to relieve some of this financial burden for them.
We are so fortunate that we can provide family with this relief. When we are able to offer a gas card, meal vouchers, plane tickets and hotel rooms, our families immediately feel a burden lifted from their shoulders. They express their gratitude to us on a daily basis. One family told me that this financial assistance is “like an angel on our shoulder during our family tragedy.”
– Amy Stevens, Social Worker
Thanks so much and Happy Valentine’s Day to all of you! My name is Lee Shaughnessy and I’m the Director of Programs for Rocky Mountain Children’s Health Foundation, a Colorado nonprofit organization. Our mission is to improve the quality of like for families, sick children and infants throughout our communities by providing support when and how they need it most. Thanks to the generosity of JC Heinen, Rocky Mountain Children’s Health Foundation was able to establish a fund to provide much needed assistance for families with children with serious cardiac conditions who are under treatment at Rocky Mountain Hospital for Children at Presbyterian/St. Luke’s Medical Center. That fund allows us to augment and stretch some of the support we can offer to these families to provide a more robust response as requested by the medical social workers at the facility.
I know that all of you will leave today’s conference enriched, enlightened, and I would even venture to say, HEARTENED, to return to your respective professions with a greater sense of purpose, but I’d also like to describe for you a little bit about how your attendance today, and Jessie’s Heart Fund monies, have made monumental differences for families at RMHC.
Imagine the worst possible news. Your beautiful newborn, so longed for and anticipated, arrives in the world with a “heart condition”. Imagine that as the professionals begin to describe the issues to you, you realize that your beautiful baby’s condition may require her to spend months at a time in the hospital. Perhaps he faces the prospect of open-heart surgery while still an infant. Perhaps your child will need at least THREE surgeries, spaced out over months or years, until he is out of the woods. What if you are told that in between these massive surgeries, your child needs to return home to recover and wait for the next installment, because home is really the best place for a child, but you are also told that you must keep an eagle-eye on your child’s weight, blood oxygen, and general condition – day and night, night and day in order to assure their survival to the next surgery. These “supposes” are faced by parents at hospitals in Colorado every week, if not every day. There are indeed excellent treatments that will help these children become healthy regular kids, but it’s a long and harrowing road.
I think all of us can agree that no child should spend even one terrifying night alone in a hospital room, but imagine the toll taken on families when that child’s hospitalization stretches out months, precluding at least one parent from being able to work or care for their other children at home, while they spend every night sleeping on the pull out couch in their child’s hospital room. How will a family accustomed to two incomes cope with only one income? How will the rent or mortgage get paid? Who is available to buy groceries? Who walks the dog? Who does the laundry? When the actual surgeries take place, who can blame the fact that BOTH parents want to be in the waiting room, hoping for the best? How do parents alternate the tasks of listening for the dreaded alarm from the pulse oximeter, that the baby’s oxygen level may have dipped at home, and a trip to the hospital is needed? What if that family lives in one of our distant rural or mountain communities?
All of these scenarios sound like “what ifs” and may not fully enlighten you with what these families experience, so let me tell you about the actual impact these funds have made. In the approximately 18 months since a restricted fund was set up at our foundation, Jessie’s Heart has helped 12 families with children ranging from newborn to thirteen years old with funds to help with the nonmedical needs they experienced. Eight families received payments covering a month’s rent or mortgage payments. Two families received funding to assist with childcare for the well siblings at home while mom was at the hospital with the infant. Two families received assistance for funeral costs when their children passed away. That is an issue that none of us wish to even think about, yet one of these families lived far from where the hospital was located and needed to return their son home for burial. Jessie’s Heart also assisted what will be a long chain of families with children who are facing that three-surgery series, by purchasing a hospital-grade continuous pulse oximeter that can be loaned to a family to use at home as part of the Safe at Home parent monitoring program. By doing daily weights and pulse ox monitoring, these extremely fragile “Intra surgical” babies are surviving these waiting periods and going on to very successful outcomes.
Our most recent assistance using Jessie’s Heart funds was for a one and a half month old, who having been discharged to home had returned to the Emergency Room five hours later in cardiac shock. She was subsequently in the Pediatric Intensive Care Unit for another 45 days and faced several more surgeries until the parents finally, reluctantly requested help from a social worker. They were facing catastrophic financial concerns, especially since the father in the family had also sustained an injury at work that required his own surgery and long recovery. Through our combined efforts, Rocky Mountain Children’s Health Foundation and Jessie’s Heart Fund paid for the February rent on this family’s apartment and allowed them to maintain some stability on their course to recovery.
I can hardly imagine a sweeter Valentine’s gift to give you than to tell you that this little girl will still have a home to return to when she is finally ready to go home. Thank you!