Congenital Heart Defect Awareness is spotlighted during February, American Heart Month. I didn’t even know about this condition that affects 1.35 million infants every year worldwide. It is the most common type of birth defect in the United States, affecting nearly 40,000 births a year.
But then I received this email from little Kellyn Kohler’s grandmother, Barbara Kohler who lives in Steilacoom. Barb wrote about Karl and Elizabeth Kohler of Spokane. They are the young parents who with sister Kaitlyn, age 10, and brother Kamden age 9 have fought every day for the health of Kellyn’s heart.
Barb shared this moving and touching description of ten month old Kellyn’s life, written by the baby’s mother, Elizabeth Kohler. I have not changed a word.
This is what Kellyn’s Mom wrote:
In honor of Kellyn being 10 months old here is a peek at what Kellyn’s strength looks like. He has had:
- 2 resuscitations
- 2 blood transfusions
- 2 blood clots
- 3 surgeries (2 additional invasive procedures)
- 10+ ultrasounds (cranial, legs, abdomen)
- 12+ echocardiograms
- 35+ X-rays
- 35+ nights in the hospital
- 40+ appointments (doctors, therapies, does not include appointments for scans or tests)
- 300+ needle pokes (medications, vaccines, blood draws, failed blood draws, IVs, etc.)
- 2500+ doses of medication (excluding injections)
- countless beeps from monitors and/or pumps (day and night every day)
When Kellyn needs blood tests done, they have to draw his blood from his head, because his profusion is so poor they struggle or can’t get blood from his arms or hands. He also has daily retching episodes a couple times a day that cause him to turn shades of red, purple or blue.
According to the American Heart Association, 1 in 100 babies are born with a congenital heart defect. There are 18 distinct types of CHDs with many additional anatomical variations. There is no cure and in most cases there is no known cause. CHD is the most common birth defect and is the leading cause of birth defect related deaths. Survival rate to age 18 is 85%, less if it is a critical CHD. And each year there are twice as many childhood CHD related deaths than all childhood cancers combined. It is the leading cause of birth defect related deaths in children, and the other is the leading cause of disease related deaths in children.
Liz Kohler added, “Our pediatrician retired at the beginning of this year and he did tell us that had Kellyn been born at the beginning of his career, he probably would not have made it. That’s not to say that no babies with CHD would have made it, there are a lot of adults living with CHD too, including athletes, actors, and musicians.
“We have been so fortunate,” the determined Mom went on. She apologized if her note to me was disjointed. She and husband Karl haven’t gotten much sleep lately. Little Kellyn had another surgery the day this article was written, bring thing the total to four in his 10 months.
He was doing fine, his mother reported.