“Before I had children I thought stories about ‘mama radar’ were exaggerated but nope. Whether it’s a fever, a white lie, a child getting ready to blow chunks in a movie theater while watching the end of Madagascar 2 (true story), or the tell-tale signs of a rare brain disorder, mama knows.”
These are the words of Dani Stone, a mother who knew. She knew something was terribly wrong with her infant daughter, even though the doctors told her otherwise. She kept telling herself, “They’re doctors. If they’re not worried, I shouldn’t be worried.” But she kept worrying. And her daughter is alive today because of that mother’s intuition.
Dani, freelance writer, editor (Book End Babes) and Community Manager (Book End Babes and Buzz Books USA), has been married to her husband Doug (Dougie) for 14 years. They were blessed with two lovely children, Jacob (11) and Katie (7). “I love these babies so much. Yes, I call them babies and tell them I will continue to do so until they have their own babies.”
The more I’ve gotten to know Dani, the more I like her (which is probably true for most people who make her acquaintance). We’re both mothers, writers, and now I know, we’re both worriers. But being a worrier isn’t always such a bad thing. (And it kind of sounds like warrior, which gives us a little more street cred.)
“I had a nagging suspicion that something was wrong and felt frustrated no one would listen to me. When Katie was born she had a nickel-sized vein in the middle of her eyes. I stared at that vein EVERY DAY. Then, it started to grow. At each well-baby checkup our doctor said, ‘She has a big head and thin skin. She’s fine.”
She was not fine.
After Dani’s insistence that Katie be further evaluated, an MRI finally revealed a devastating diagnosis, Vein of Galen Malformation (VOGM). This rare disorder, often referred to as a vein of Galen aneurysm, is a rare blood vessel malformation in the brain that occurs before birth. With these types of malformations, the patient lacks capillaries to slow the blood flow between arteries and veins. As illustrated, without capillaries, blood is shunted directly in to the vein at a high output. This increases the workload of the heart. If left untreated, VOGM often results in abnormal brain development, mental retardation, strokes, seizures, paralysis, learning difficulties, hydrocephalus and ultimately cardiac failure and death.Death. No mother should ever be faced with their child’s mortality, especially at such a young age. Babies with VOGM, without treatment, rarely see their first birthday. Katie literally had a ticking bomb inside her head and the Stones had no idea where to turn, except to the internet. There, they found a doctor in New York City. Miraculously, after three embolization treatments over three years with with Dr. Alejandro Berenstein, Katie was VOGM free.
Around the Stone’s home, they have the word, “Believe” prominently displayed in several places. As they dealt with Katie’s diagnosis and treatment, they kept that word in their minds but not in the way most people think. They had to BELIEVE that whatever happened to Katie was meant to happen. “It is as it was ordained to be,” once said a woman who helped guide them to Dr. Berenstein, even though her own son died from complications resulting from VOGM.
Last September Dani created the VOGM Parents Alliance, as a way for parents to connect, learn more about VOGM and find qualified surgeons who treat the disorder (there are very few). “There are times when I feel a panic attack coming on because a certain story or circumstance will be eerily similar to ours but Doug and I made a vow to pay it forward so I listen, and encourage and point them in the right direction. We know the statistics. We know our outcome, that is, Katie being diagnosed late but still being cured with no long-lasting side effects (palsy, neurological defects, blindness, seizures, mental retardation) is rare.”
She is the exception, not the norm. “To those whom much is given, much is expected.”
So what helped Dani find the strength to not only see her daughter through this ordeal, but to reach out to others?
“My main source of strength as I’ve dealt with VOGM has been my trust in God, my Dougie and my family, in that order. During the course of Katie’s treatment Doug and I never said to each other, “It will be okay” because by that time, we knew too many parents whose children had passed away from VOGM. We knew there was a good chance it wouldn’t be okay so we simply prayed for strength.”
Even though Dani and her husband had braced themselves for the worst, the worst didn’t happen. Their prayers for strength were answered, too, as they found a way to endure countless sleepless nights, long flights back and forth to the East Coast, expensive medical treatments, and found the courage and goodwill to help others walking down the same path. The signal on Dani’s ‘mama radar’ came in loud and clear. And she not only listened, but acted, despite what the ‘experts’ told her. Her intuition saved her daughter’s life, and her selfless desire to help others will no doubt save the lives of other children, too. She is a mother who whole-heartedly loves her family, and this crazy thing we call life.
“A long time ago I heard a quote about parenting and it continues to resonate with me,” Dani said, “Everything is a phase, the good and the bad, so remember the good, get through the bad and cherish everything in between.”
Momazing Mondays: I’ve decided to put my creative skills to use and tell the stories of mothers who are truly unique, inspirational and amazing. If I have enough stories, I’d like to post one at the beginning of every week. Please send me an email at catherine DOT poland AT gmail DOT com if you know of a momazing mother. Read week #1 story “Momazing Monday: Mother of Nine Proves Quantity and Quality are Possible” and week #2 story “Momazing Monday: Mommy Wars Don’t Matter – Mommy’s At War.”