Congenital Heart Defects Awareness Week in Swanton
Congenital Heart Defects (CHDs) consists of problems with the heart’s structure or the way it works and are the most common type of birth defects in America. Approximately 40,000 babies are diagnosed with this very serious, often chronic and sadly, sometimes fatal condition in the United States every year. To put it into perspective, that figure is just below the entire population of Fulton County.
Unless you have had this experience, it is impossible to imagine or even put into words what a family goes through when, after being blessed with the miracle of birth, needs another miracle or more to keep their child alive. Two Swanton families, each with a child living with CHD, can attest to the monumental emotional and physical struggles that follow this nightmarish diagnosis.
At a recent Swanton Village Council meeting, these two children and their mothers were in attendance to accept a proclamation from Mayor Neil Toeppe recognizing February 7-14, 2021 as Congenital Heart Defect Awareness Week. The children are Shelby Frost, a seven-year-old first grade girl currently learning through the Swanton Virtual Academy of Swanton Elementary and Caden Laney, an 11-year-old fifth grade boy at St. Richard’s Catholic School. Below, written in the words of their mothers, Mary Frost and Cookie Laney, is a brief synopsis of their journey from birth to today.
Shelby’s Story: “My daughter was, what I thought, a normal pregnancy. I was 36 years old, which in medical terms is not normal, it is deemed advanced maternal age and therefore more risks. We knew there were some risks at that, but I was sure God would make everything okay. He had brought me through a four-week premature baby with no problems, so I was sure God would take care of getting through this pregnancy. There was no mention of CHD by the doctor, and only a small blurb on it in one out of three of the pregnancy books I read.
The pregnancy went okay and her due date came and went. The next day I had a doctor’s appointment and they said I was having contractions but sent me home to rest until I felt consistent. Later that night we went into the hospital to have our baby girl. Little did I know what would come next. After giving birth, my baby girl was having trouble keeping her temperature up, and afterwards, when they thought she was fine, I was allowed to try nursing her. As I tried, I noticed her hands and feet were purple. I asked the nurses and they said it was okay. We finally were heading to the post-partum room and stopped to give her to the nurse for a bath. After that, I was unable to hold my baby for a week.
I remember getting some sleep but waking up feeling like I needed to nurse my baby and could not get a hold of anyone to find out where my baby was. They said to get some sleep and the next thing I remember was a cardiologist in my room telling me my baby’s heart was not right and she is in the Neonatal Intensive Care Unit (NICU) but will need to be sent to the University of Michigan for open heart surgery. She was diagnosed with Partial Anomalous Pulmonary Venous Return (PAPVR) but after arriving at U of M, was diagnosed with Total Anomalous Pulmonary Venous Return (TAPVR-Oxygenated blood returning from the lungs was being drained into the wrong area of the heart).
At 27 hours old, after giving consent over the phone, my daughters heart was surgically altered. The surgery lasted five or six hours. We were finally allowed to see her and walked into the room with my daughter’s chest wide open with a film covering it. You could see her heart beating through it.
She stayed in the hospital two weeks and was released to go home. We had echocardiogram scans of her heart again at two months then at six months. After that we had scans done every 6 months and the doctor noticed the pressure in her heart rising ever so slightly at each appointment. At her appointment just after three years old we were unsure of the doctor’s concern that he consulted U of M and came to the conclusion that the hole in her heart was not growing with her. At that point another surgery was scheduled. Two months after turning three she had her second open heart surgery at Michigan. After only four days recovery she came home. We again had scans every six months to keep an eye on her pressure and after turning five years old she was cleared for yearly scans because her pressure was not increasing. Thank the Lord!”
Caden’s Story: “Caden was diagnosed at birth with bicuspid aortic stenosis (Aortic Valve Stenosis. A normal aortic valve has three leaflets that form a gateway from the heart to the rest of the body. Caden’s bicuspid aortic valve was stenotic or tight and restricted blood flow exiting his heart.) He had his first surgery at exactly four weeks old which was a heart catherization to try to open up his aortic valve. Caden had regular check-ups every month to three months for the first five and one-half years of his life. When he was five, his numbers were getting a little more up there than his doctor liked so they did another catherization. After that, they decided he needed emergency open-heart surgery. Caden had open heart surgery called the Ross-Konno procedure where they removed his bad aortic valve and replaced it with his own pulmonary valve and they then used a cadaver valve as a replacement for the pulmonary valve they used for the aortic valve.
Caden has taken all of it in stride and continues to amaze me with his outlook. Last year he started a toy drive for other kids spending the holidays in the hospital called Caden’s Wish Toys for Tiny Hero’s where he collects toys in lieu of his own Christmas presents to donate to the three children’s hospitals in the area Mercy, Mott’s and Promedica. I believe this, along with being active with Conquering CHD is a tremendous part in helping him cope and live with his condition and continuing to thrive.”
In addition to both families remaining vigilant to the children’s condition they are both active in increasing the awareness of CHD. Ms. Frost shares #chd awareness on her photography Facebook page at www.facebook.com/frostdesigns as well as other social media. Ms. Laney is active with the ConqueringCHD organization at conqueringchd.org/ohio.
Pictured: Shelby Frost and Caden Laney