Mother's intuition helps save daughter's life

The fourth surgery was one that would save her life.

HIGHLAND, ILL. - It's called a mother's intuition, or a mother's instinct. A Highland, Illinois, mom believes her baby is alive today because she listened to hers.

What happened next led surgeons to fix a devastating birth defect in a bold new way.

"Something in my mommy genes told me something was wrong with her and I just had to get to the bottom of it and I'm glad we did," explains mother Becky Becker.

Her 14-month-old daughter Macie is blowing kisses, and on the verge of talking.

But back in October, at just 4-months, even taking a bottle or holding her head up was a struggle.

"She couldn't breathe,” recalls Becky. “I had to run a shower every night to give her a night bottle."

Smiling is part of this baby's sunny nature, even while in this recovery room at SSM Cardinal Glennon Children's Hospital, sucking on popsicles and in the arms of her dad Bryan right after a brain scan. 

Quite different from Macie's first few weeks of life, when she was fussy with chronic nasal congestion and a sinus infection.

"So at her 4-month check-up, I said enough is enough,” says Becky. “I want to go to an ENT (ear, nose and throat) specialist."

It was a mother's instinct that would save this baby's life.

"He says, 'The good news is you don't need me, bad news is, you've got to go straight to Cardinal Glennon,'” remembers Becky, “he says, 'Your daughter has a lot of fluid on her brain.' Your heart just sinks."

On Oct. 7, Macie was diagnosed with something called a Vein of Galen malformation.

Becky saved the doctors drawing of this rare and dangerous blood vessel abnormality in the brain, a birth defect where arteries are directly connected with veins.

"It causes high pressure in the veins which usually have a very low pressure, and so everything that has to drain into the veins backs up, some of the fluids in the nose and so on,” explained Dr. Randall Edgell, an SSM Health Cardinal Glennon Neurologist. “And that's what made her appear to have a stuffy nose."

The bottom line: Macie was a gravely ill little baby.

"He told us, 'I never get to operate on babies this old,' and we said, 'Well, what do you mean?'” says Becky. “And he said, 'Well, babies who have this die within a couple of hours of birth.'"

Over the next nine days, Macie underwent four emergency surgeries, three to open blocked or collapsed blood vessels. But the fourth one would save her life.

Dr. Edgell and his team of neurosurgeons performed a type of microsurgery that had never been done on anyone diagnosed with a Vein of Galen abnormality before. 

Using a tiny catheter, they guided a microvascular plug, called MVP for short, through the vessels in her brain, eventually ending up at the malformation. The plug closed off the feeder vein that was endangering her life.

"That night, we couldn't cry anymore, and we asked the nurse, is this normal? It made me feel like a bad mom because I couldn't cry anymore. And she said 'No, you've had enough you've reached your breaking point,'” says Becky.

But images in the operating room told doctors they had just given Macie at chance at a long life.

"There was immediately a dramatic reduction in the amount of flow going through that connection,” says Dr. Edgell, “and the next day we could see that a clot had formed in the malformation, which meant the blood flow had stopped all together."

Macie's latest brain scan confirms the malformation is gone. 

Before and after photos show just how swollen Macie's head had become. 

But with that special plug and a shunt now in place, doctors are confident that fluid won't build up again.  Allowing these parents the peace of mind to focus on the important things in life, like teaching Macie how to walk.

"I tell all my friends you go with your gut, just go," says Becky.

Macie is happy and healthy, and her prognosis is excellent.

We want to hear about the times your mother's or parent's intuition paid off.

Look for this story on Kay Quinn’s Facebook page and let us know.


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