The month of February is Congenital Heart Defect Awareness. We have a guest blog post from two High Hopes’ families, the Boyers and Daniels, sharing their family’s journey with a Congenital Heart Defect diagnosis.
Congenital Heart Defects (CHD’s) are the most common type of birth defects. CHD’s effect about 40,000 births per year in the United States. About 25% of babies with a CHD have a critical CHD. Critical CHD’s generally require surgery or other less invasive procedures in their first year of life. CHD’s are the leading cause of birth defect related infant death. About 20-30% of people with a CHD have other physical problems or developmental or cognitive disorders. The occurrence and severity of a developmental disability or delay increases with how complex the heart defect is. So a therapy center like High Hopes become a heart family’s second home.
With 40,000 births per year, or 1 in 100 births being affected, one wouldn’t imagine that 2 of their 5 children could possibly be affected. But that’s where the Daniels found themselves.
From parent Ashley Daniel:
I have 5 children. The statistics haven’t applied to our family, as we have had 2 children born with Congenital Heart Defects. Jake (12 years old), was born with CoArctation of the Aorta and Bicuspid Aortic Valve. We were unaware of his condition at birth, as his Apgar scores were high, and at the time, no interventions were required to assess infant hearts, unless deemed necessary. (Now, the Pulse Ox assessment is required on every newborn.) He went home, unaware of his heart condition, and at 9 days old, his body went into shock. He was rushed to the hospital and after assessments, was diagnosed with his condition. He had his heart surgery at 12 days old and has been closely followed by the Vanderbilt Cardiology team and is now able to play competitive sports! Our youngest son, Caleb (5 years old), was diagnosed in utero with Hypoplastic Left Heart Syndrome. The left side of his heart was undeveloped, so his condition is called a “half a heart”. He had a series of three open heart surgeries to reconstruct his heart to function as a single ventricle, which led to further surgeries and complications, eventually leading him to a heart transplant at the age of 4. Throughout his young years, he has required many therapies a week as his development was very delayed.
From parent Ellen Boyer:
Ashley and I met when Caleb was around 6 months old. Caleb was the first kid I had ever met who had open heart surgery. Never did I think I would be in Ashley’s shoes...having to hand my own child over for open heart surgery just 3 short years later.
When we received our daughter-Brett’s AVSD (Atrioventricular Septal Defect) diagnosis, we were overwhelmed. Ashley was a wealth of knowledge and recommended surgeons, cardiologist, and of course, High Hopes for all of Brett's therapy needs. Children with CHD and Down syndrome often require therapies early in life or leading up to their surgery and beyond including speech, occupational, physical, and feeding therapies. Brett received feeding therapy at High Hopes and we couldn’t have felt more love and support from their exceptional team. I will forever sing their praises!
In addition to having a heart defect, Brett had Down syndrome; about 50% of children with Down Syndrome will have a congenital heart defect. The Atrioventricular Septal Defect is the most common heart defect among children with Down syndrome. Fortunately for most, the surgical repair for an AVSD has a 97% success rate…unfortunately; we fell in the 3%. We lost Brett after 7 courageous months of fighting her CHD. But the light she left shining in our lives shines as bright as ever today. In our grief, we started The Brett Boyer Foundation and we are filled with hope that we can help make a difference in the world of congenital heart disease treatment and continue to spread love and awareness for the incredible people living with Down syndrome. That mission also includes supporting the efforts of High Hopes who are rallying around families to give them the same love, support, and therapies that they did for us.
For children with CHDs, hitting typical milestones differs with each defect and from child to child. Sometimes, children with CHDs have developmental delays which can be an effect of lengthy hospital stays as infants as well as insufficient blood flow to the organs. Feeding, as well as speech motor, is typically a challenge. Some are not able to take in nutrition (breast milk/ formula) for long periods due to upcoming surgeries or being on life saving technologies such as ventilators, so they may be fed only what is necessary via IV (lipids, fluids, etc.). Many children require a NG (nasogastric) feeding tube that brings food from the tube via the nose to the stomach, to add additional calories. The typical suck/ swallow pattern can be challenging as it is actually hard work for these infants, and they can actually burn more calories than they take in. Many times, aversions develop to foods, as they don’t learn the process of eating in a typical pattern. Working closely with a feeding therapist is common to help these children develop these skills and grow and gain necessary weight. Many times, infants with CHDs have lengthy hospital stays from infancy or during the infant developmental years, causing them to miss hitting the typical milestones at appropriate ages, such as rolling over, sitting up, crawling, and infant reflexes. As a child develops and moves through these stages, they are precursors to future developments (such as handwriting, walking, etc.). Many of these children require intense physical and occupational therapy to build and retain atrophied muscles and skills.
The services that both of our families have received from high hopes have gone so far beyond therapies. The therapists have loved our children like their own and have been in our corner like they are family. The care that they give has made such a difference for our children and all of the children they serve. Our community is so fortunate to have access to such amazing care for our little heart warriors!