Meet Braxton, age 4. Our Tiny Little Hero with SWCAH.
Braxton is 4 years old. He is very shy but loves to have fun. When he was 6 days old, he was diagnosed with Salt Wasting Congenital Adrenal Hyperplasia also abbreviated as SWCAH. What a mouthful!
After coming home from the hospital, with their first baby, his parents received frightening news. At only 6 days old, they were told to go immediately to the pediatrician’s office. During newborn testing, one of the blood tests, a test that measures the cortisol levels, was abnormal. (17-Hydroxyprogesterone is the official name) Cortisol is a hormone released by your adrenal glands. It’s function is to regulate the body’s salt content, as well as androgen hormones (male sexual hormones).
What does this mean for Braxton?
•He is very tall for his age. Children tend to be tall, and as they mature into adults, often they are shorter than average.
•He must wear a medical bracelet. Salt-wasting CAH is the severe form of classic 21-hydroxylase deficiency, and can be life threatening. In this type of CAH, the adrenal glands make too little aldosterone, causing the body to be unable to retain enough sodium (salt). Too much sodium is lost in urine (thus the name, “salt-wasting”). If undiagnosed, symptoms of classic salt-wasting CAH appear within days or weeks of birth and, in some cases, death occurs.
Symptoms may include:
•He is extra cautious during flu season. Something referred to as “Adrenal Crisis” occurs when children like Braxton get the flu. Even some vaccines, physical stress or injury could send him into crisis mode. He sleeps extra deeply when sick, due to the hormone imbalances.
•He has a mandatory medication, called hydrocortisone. According to the World Health Organization, hydrocortisone is the drug of choice for SWCAH because it aids with glucocorticoid replacement therapy. The aim of treatment is to suppress the adrenal androgen production without impairing growth.
Although Braxton has a serious condition, he is still very much a busy little boy. His mother has hopes that he will still play and live life to the fullest, and not live in fear of getting injured or sick. He will live a little more cautiously than other little boys, but he is a tiny little hero to everyone who knows him!
Please share this story to raise awareness for SWCAH and other illnesses related to Adrenal function.
Support group recommended by Braxton’s mother is Parents of CAH kids on Facebook.
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