The Best of Heartbeat

 

More Than Just Bags


By Michelle Gibbs

A pen and journal. Shampoo. A cozy blanket. Coloring books and crossword puzzles. These things can easily be taken for granted on most days. But for families who are facing a hospital stay because their child is having a heart procedure or surgery, these simple items can feel like real luxuries.

About 1 in every 110 babies is born with a congenital heart defect each
year in the United States, making it the nation’s most common birth defect.

 Nearly 25 percent of those children will need open-heart surgery or other medical intervention to survive. Many families find out suddenly about their child’s CHD and the need for surgery after birth. They may be unprepared for an extended hospital stay.

MLH’s Bravery Bags provide a few comforting items to help them through that trying time.

 

Help and Healing

Mended Little Hearts works with hospitals and health care professionals to support families when they need it most. The Bravery Bag program is just one way that MLH provides families with courage, strength and a sense of connection during their time of crisis and uncertainty.

The Bravery Bag improves the patient/family experience at the hospital. “When a child needs a heart surgery or procedure for congenital heart disease, the whole family has to be very brave — the child, his or her parents or caregivers and any siblings,” explains Mended Little Hearts National Program Director Jodi Lemacks.

“The Bravery Bag Program recognizes their bravery, arms them with courage and helps make their hospital stay a little easier. In the Bravery Bag, we include a Courageous Heart Token as something special they can carry with them to remind them that they are not alone in their journey.”

The bags give families some of the essentials needed for a hospital stay, whether that stay is planned or unexpected. In addition to the token and a stuffed version of MLH’s lion mascot (Stitch), the reusable bags contain a variety of useful items such as toiletries, snacks, awareness wristbands, pens, coloring books and crayons.

They also include the Mended Little HeartGuide Lite, a resource for parents and caregivers of children with CHD (it’s available digitally at mendedhearts.org/heart-guides).

MLH groups around the country distribute the bags at hospitals. If a group does not work with a local hospital, they help other groups with Bravery Bags.

“Families often tell us how much it means to them to get a Bravery Bag and how useful the items are to them,” says Karen Wilkinson, a business development specialist at Texas Children’s Hospital in Houston.

“Receiving a bag also lets the family know that someone cares about them.”

At Children’s Health System in Dallas, Texas, licensed clinical social worker Analisa Trott of the hospital’s Heart Center agrees: “Families always express deep gratitude to know that such thoughtfulness and care have been put into creating bags that have their needs in mind while in our Cardiovascular Intensive Care Unit. The bags go beyond meeting the practical needs of parents to offer an opportunity for the entire family to know they are not alone.”

 

At Just the Right Time

In August 2017, when Aimee Coonfield found out that her unborn son had
a congenital heart defect, she was quick to join Mended Little Hearts of Indianapolis. Her son Caden was born three months later with hypoplastic left heart syndrome, dextrocardia and a host of other heart problems.

Caden’s HLHS meant that he basically had to rely on half a heart
and only one ventricle to pump all of the blood for his body. Because of the dextrocardia, Caden’s heart was located on the right side of his body rather than the left, and some of his anatomy was displaced. The family received a Bravery Bag right after Caden’s first open-heart surgery, just as they were facing a four- month stay at Riley Children’s Hospital in Indianapolis.

“We were very excited to receive the Bravery Bag,” said Aimee, “because it felt as though someone cared about us and that there were others who knew what we were going though. I have several friends who are nurses and nurse practitioners who recommended that I join the MLH Indianapolis group for support, fellowship and to help answer questions that I might have along the way. It is a great program that really makes families feel special during a difficult time.”

Today, the family is thriving and continues to support the programs that helped them on Caden’s journey. In May, Caden’s father ran in the Indianapolis Mini Marathon, wearing his firefighter gear, to raise money for MLH and CHD awareness.

 

You Can Help!

Lemacks and other MLH leaders receive countless stories like these via emails, calls and social media posts from people who have received a Bravery Bag.

“The Bravery Bag program is an essential support program for Mended Little Hearts,” says Lemacks. “As parents and families ourselves, we know that this bag is so much more than just a bag. It is a lifeline.”

The need for Bravery Bag items is great. Mended Little Hearts distributes more than 5,000 Bravery Bags annually and would like to do even more, eventually reaching 10,000 distributed bags — one for each baby born with a critical CHD each year.

Anyone can donate to Mended Little Hearts for the Bravery Bag Program
by visiting the MLH website at mendedlittlehearts.org or by contacting a local group. With your help and support, MLH can meet its goal of distributing bags to more and more heart families.