Home Is Where Your Child Is {Recovering from Heart Surgery}

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Disclaimer :: The Ronald McDonald House of Fort Worth (RMHFW) sponsored and crafted this post about its work with families of chronically ill children undergoing heart surgery and transplant.

RMHFW Sponsor Kayla, Carl, and CT“We had no idea what we were about to embark on,” say Kayla and Carl Griffin, parents to CT — an almost three year old with a congenital heart defect. “We thought CT would have open heart surgery and be on our way; no big deal, right?” Unfortunately, this was only the beginning of their almost seven months of living at the Ronald McDonald House of Fort Worth® (RMHFW), and of a three-year-battle for CT’s life.

February 7 through 14 is congenital heart defect (CHD) week and a time to honor all the families with children dealing with these issues. 

A One-in-Four Chance at Surgery

According to the Centers for Disease Control and Prevention, a CHD — which is present from birth — can impact both the structure and function of a baby’s heart. Blood flow through the heart and throughout the rest of the body is affected. The level of severity can range from mild (a small hole in the heart) to critical (missing or poorly formed parts of the heart). One in four babies affected by heart defects will require surgery or other procedures in the first year of life and even, perhaps, a heart transplant.

CT was the one-in-four, having been born with hypoplastic left heart syndrome (HLHS), a critical CHD. In HLHS, the left side of the heart does not form correctly. CT was transported to Cook Children’s Medical Center and underwent multiple surgeries in the first few months of life to correct his defects. After almost seven months at RMHFW and Cook Children’s, and several attempts at transplant centers around the country, CT was accepted at Texas Children’s Hospital in Houston to begin his transplant journey.

RMHFW Sponsor Kayla and CT

A Feeling of Home

For Kayla and Carl Griffin, Ronald McDonald House of Fort Worth was the closest thing to a sense of normalcy that they experienced after CT was born. They lived in Waco, and traveling back and forth was not an option with CT being so sick. Their social worker at Cook Children’s Medical Center introduced them to RMHFW.

“The Ronald McDonald House of Fort Worth became our place for naps, showers, food, and the feeling of home,” says Kayla. “We would often stay at the hospital overnight, but my mother would stay at the [Ronald McDonald] House every night while my father came on weekends and holidays. We were able to be together as a family.

“The House is such a blessing to anyone who steps through its doors. From staff and volunteers to parents of chronically ill children, you leave the House a much better person than when you arrived. They kept us alive so we could take care of CT. The House is built on nothing but love and hope, and it is an absolute lifeline for the families who come to live there.”

A Year of Visits

In 2018, RMHFW served 869 family visits (total 11,954 nights) with an average stay of 14 days. Cardiology is the third leading diagnosis for families staying at RMHFW, behind premature birth and oncology.

For a sick child, sometimes the best medicine of all is having family nearby for more hugs, kisses, and “I love yous.” The 57-room facility provides safe spaces for families to be together only steps away from the hospitals. As part of the 57-rooms, RMHFW retains six transplant suites which are ideal for the transplant patient who has been released from the hospital but is not quite ready to be home. Additionally, the Ronald McDonald Family Room and newly-implemented day program allow families who are not staying at the Ronald McDonald House to receive the comfort and care of its mission, which offers a supportive, home-like community that eases burdens for seriously ill children and their families.

Ronald McDonald House
Photo by Sharon Ellman

The Ronald McDonald House of Fort Worth is a refuge for hundreds of families each year, and its staff is committed to serving thousands more in the years to come. Its mission is fulfilled by staff and a multitude of volunteers. If you would like to learn more about how you can be involved with its mission, please visit www.rmhfw.org.

Beth Lamb, chief marketing officer for the Ronald McDonald House, has been in education and non-profit communications for almost 25 years. Beth is actively involved with the Fort Worth Chapter of Public Relations Society of America and currently serves as president. She is a graduate of Texas Wesleyan University and is married with two grown children.

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