A FIRE WITHIN … Amanda Hoover sits calmly by the lovely fireplace at Kora’s Brew in Bryan, Ohio, following an interview in which she expressed the fire that burns within her heart to help other families with “heart babies.” (PHOTO BY REBECCA MILLER, STAFF)
By: Rebecca Miller
For the past three years, a Proclamation has been made in Williams County for Heart Week to be held in February. Amanda Hoover, a young mother whose son Bryson was born with a heart defect, has been the driving force behind this proclamation.
Hoover shared in an interview that when this idea came to her, she went straight to Bryan Mayor Carrie Schlade to ask how it could be done. “I shared our story with her, and my desire to make others aware of the need, and she took it to the WC Commissioners. They agreed and willingly made the proclamation for the county,” Hoover said.
Getting this proclamation for her county is just one of the many volunteer efforts in which Amanda has found herself involved over the past six years. Of course, no one plans to have a child who is born with a heart defect, but when it happens it is a life changing event.
Amanda and her husband Juston welcomed their son Bryson into the world, six weeks before his due date, in November of 2015. He was placed in NICI (Newborn Intensive Care Unit) for the first six weeks of his life, and it was diagnosed two weeks later that he had a congenital heart defect (CHD).
Bryson’s heart problem is a rare condition called Total Anomalous Pulmonary Venous Return, or TAPVR. With this condition, oxygen rich blood does not return from the lungs to the right side of the heart, or as Amanda put it, “his pulmonary veins did not route correctly to his heart.”
Surgery is required to correct it, making it a critical CHD, but as he was born at only 5 pounds and 4 ounces, they had to wait until his weight was up.
Over the next three months, the family and Bryson’s doctors met his needs with whatever means necessary. They had to feed him through a nose tube, which Amanda explained, is basically done by gravity. He developed GERD, a digestive disorder which made him very uncomfortable.
He did get to go home after six weeks, but with the special type of feeding going on, one day he aspirated (breathed in) his thick milk and spent another five days in PICU (Pediatric Intensive Care Unit) at Mercy St. Vincent in Toledo.
At that point the pressures in his heart, at almost three months old, “were horrible and his lungs were partially collapsed. It was not looking good,” she said. The surgery was performed at the University of Michigan CS Mott’s Children’s Hospital.
There were complications during surgery, but they did miraculous work, choosing to repair the heart differently than they normally would with an older baby.
During the next three years, Amanda found herself searching for others who had been through this crisis, but with little success.
She did find a group on FaceBook where she got some support, and her family was there for her, but she felt a great need for others in the same boat with whom she could connect locally.
Besides being wife to Juston, stepmom to sixteen-year-old Madyson, Mom to Bryson, who is now a six year old Kindergarten student, and to their four year old “heart healthy” daughter Aleigha, Amanda Hoover is a very busy woman.
She works full-time in Sale Support and Traffic at Spangler Candy, is active at their church (New Hope Community in Bryan), and is getting a degree online in Business Marketing. That has not stopped her from spending many hours ever since Bryson was born, reaching out to other “heart baby” moms.
Right from the beginning, people started telling other “heart baby” moms that they should call Amanda with their questions. She found herself being the encouragement line for others and began to feel a sense of purpose.
While attending a Women’s Empowerment Group at her church, she felt very drawn to doing something “official” in this new purpose that she was feeling. After praying about what to do, she had the idea for an area Proclamation.
In 2019, the group “Conquering CHD”, which is spreading across the nation, came to Northwest Ohio. (For those who need the support, go to Conqueringchd.org/Ohio or email firstname.lastname@example.org).
This group is all about spreading awareness and knowledge through the community. They offer support through online chat networks, in person peer support, CHD Kits, social events, physician education, research promotion and advocacy activities.
Amanda Hoover found out about this group from Amanda Harper, whom she met while the first Proclamation was being photographed in the courthouse in Bryan.
Harper is the Adult Coordinator for “Conquering CHD”, and just recently Hoover was named to the board and is the NWO Co-Lead with Tanya Laney, who lives in Swanton. Needless to say, she plugged in immediately and has been volunteering in this group ever since.
She began by helping to gather and dispense the CHD Kits, which are made up of information about heart defects, a notepad, their calling cards, an invitation to the FB group and some good fun goodies.
There is a onesie that says CHD Warrior on it, as well as a little red baby hat in the kit. Her mom makes the little red baby hats and tiny octopi for the NICU. (Amanda is grateful for all the love and help from her mom and dad, Lois and Lavon Flower of Montpelier.)
The kits also contain travel size shampoo, tissues, etc. for hospital stays. She started making kits and delivering them to Mercy St. V’s NICU and is still doing that as well as checking with them to know if they need more.
She has also been very involved in events that gather CHD families for fun and support. They just did a Lights at the Zoo event with “Conquering CHD” on November 19, 2021 and enjoyed time with their families at the zoo.
They had about 50 people who participated in that event. “It is so important to attend events and be encouraged by each other or just have family time,” Amanda explained. The events are all “covid friendly”.
Last year she started assembling Prenatal Kits for the moms who know ahead of time. She places them at the Toledo Children’s Hospital, giving the nurses and doctors something to give to the parents who have found out before their child’s birth, so they are more prepared. Recently she has gotten them approved at St. V’s also, so they will soon be there, as well.
Coordinating events for NWO and placing the CHD Kits, includes quite a few counties for the co-leads. Williams, Fulton, Lucas, Wood, Paulding, Defiance, and parts of a few farther away are all seeing the benefits of these hard-working volunteers.
“I haven’t kept quiet,” Amanda said with a smile. “I don’t want to leave this place without leaving a footprint.”
That footprint includes: spreading the word on FB and connecting with people referred to her by others; being an active Conquering CHD Board member; coordinating events (such as the Toy Drive that they do at CS Motts in Michigan); Organizing Fundraisers like the Walk/5K at Fallen Timbers; and gathering folks for the Proclamation each year.
All of this is volunteer and Amanda has a great sense of purpose and accomplishment as she is helping others.
This January 31st, the third Proclamation will be read at the Commissioners Monday morning meeting, declaring February 7-14, 2022 as Heart Week. At 4 p.m. that day anyone who wants to join in is welcome to come for a moment of Photography on the steps of the second floor in the Courthouse.
Participants will include the Williams County Commissioners, “Conquering CHD” members , any local elected officials, and any heart families, as well as anyone affected by CHD, so Hoover extends an invitation to anyone wanting to join in this event.
The Proclamation is to draw attention to this need in the community. There are not any specific events planned during the week of February 7, 2022, but Hoover is hoping that families and community members and businesses will join in to make others aware.
She is contacting businesses presently to see if they will allow someone to paint a red ribbon on their storefront. Anyone interested in participating can contact her at email@example.com.
As the Hoover family comes up on their sixth “heartiversary” for their precious son, Bryson, Amanda is very aware that heart babies deal with it for life. They are always getting checkups to make sure they are fine.
For her son they especially watch for an arrhythmia. She was thrilled when at the most recent checkup they were told he does not need to see his cardiologist for three years! For Bryson to be a healthy six-year-old is amazing, after all he has been through.
Each family has their own concerns and joys, but having this group, “Conquering CHD”, is a great source of help, support and encouragement to them all.
As the Heart Week Proclamation is made on January 31, 2022 for February 7-14, 2022, may we all be more aware of those around us with “heart babies” who need support and assistance
Rebecca can be reached at firstname.lastname@example.org.