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By Jack Beresford
Senior Reporter
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Tiffany Bates, a stay-at-home mom, was left fearing the worst when scans indicated her daughter had a devastating health condition. Two years later, however, much has changed.
Tiffany Bates has three daughters, the youngest of whom is named Kyliah. There was nothing out of the ordinary about Bates' pregnancy with Kyliah at first. However, that all changed when she went for her 20-week ultrasound.
"That's when they found a severe amount of fluid building up in her brain," Bates told Newsweek.
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Bates was referred to a specialist the very next day. Because of the severity of Kyliah's case, she was eventually referred to a larger children's hospital about two-and-a-half hours away for weekly ultrasounds.
"Each week, the fluid continued to increase," Bates said, who added that Kyliah was initially diagnosed with ventriculomegaly, a condition in which the fluid-filled ventricles of the brain are larger than normal.
Often detected during pregnancy, ventriculomegaly can range from mild to severe and may, in some cases, increase the risk of developmental problems or hydrocephalus, a buildup of fluid in the brain. This buildup can create pressure that damages delicate brain tissue and interferes with normal development.
Hydrocephalus affects an estimated one to two out of every 1,000 babies born in the U.S. and is among the most common neurological conditions in infants, according to Johns Hopkins Medicine. Symptoms can include rapid head growth, vomiting, poor feeding, sleepiness, seizures, and developmental delays. Left untreated, hydrocephalus can result in learning difficulties, vision and movement problems, and, in severe cases, permanent brain damage.
Bates learned much of this during her pregnancy. The prognosis for Kyliah was not good.
"We were told that because of the severity, she might never eat, breathe, see, walk, crawl, or do anything independently," she said. "The fluid buildup had affected her brain development, and the doctors were concerned that the parts of her brain responsible for basic functions were not developing as they should."
Bates had been scheduled to deliver Kyliah via C-section because her head was measuring larger than that of most newborns. However, she went into labor early, prompting a mad dash to the hospital two-and-a-half hours away. By that point, everything they had been told had left Bates fearing the worst.
"We had spent months praying that she would be able to function like any other baby, but we had also been told that she might not be able to do those things," she said.
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But while Kyliah required a couple of minutes of breathing support via a continuous positive airway pressure (CPAP) machine immediately after birth, she was soon breathing on her own and able to begin eating shortly afterward.
"Those were two things we had been told she might never be able to do," Bates said.
Her brain had been so affected by the fluid buildup that doctors had serious concerns about the areas associated with basic functions such as breathing and eating.
After birth, Kyliah was diagnosed with hydrocephalus caused by aqueductal stenosis. This occurs when the cerebral aqueduct, a narrow channel that allows cerebrospinal fluid (CSF) to flow between the brain's ventricles, becomes blocked or narrowed. This prevents the fluid from draining properly, causing it to build up in the brain and potentially lead to serious complications.
Initial brain scans were concerning.
"The amount of fluid was so severe that it affected her brain development," Bates said. "Her brain was extremely underdeveloped, and many of the structures the doctors expected to see were not visible on her scans. This is why we were given such a serious prognosis and why doctors were concerned about whether she would ever be able to perform basic functions independently."
Early intervention was crucial, and while it was devastating to receive Kyliah's diagnosis so early, that early detection enabled doctors to act quickly.
"Because of the severity of her hydrocephalus, the next step was brain surgery to place a VP shunt, a small device that helps drain excess fluid from the brain and redirect it to the abdominal cavity, where the body can absorb it," Bates said. "She had this surgery at just 2 days old."
Kyliah spent 17 days in the NICU.
"Those days were very hard and very long. We practically lived at the hospital, away from our other two daughters, while trying to navigate everything that was happening," Bates said.
Kyliah required a feeding tube for the first couple of weeks, but she eventually went home eating entirely on her own. Since then, she has regularly participated in occupational and physical therapy.
There have been challenges along the way. Kyliah requires a shunt, and there is always the possibility of a malfunction. At around 6 months old and again at 9 months old, Bates said Kyliah underwent shunt revision surgeries after becoming unwell.
But by age 2-and-a-half, a scan of her brain told a very different story from the one taken when she was a newborn.
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"The difference between the two is remarkable," Bates said. "On her first scan, the areas that appeared gray were explained to us as fluid, with very little developed brain tissue visible. On her more recent scan, you can see the significant difference in her brain development."
Bates is a Christian and considers what has happened since that first scan to be something of a miracle. She and her husband leaned on their faith, believing God would help them through whatever the outcome might be.
"I feel like Kyliah is a miracle because of how much her brain has grown and developed over these two-and-a-half years," she said. "We were told she might never eat, breathe, walk, talk, or live what most people would consider a normal life."
Today, Kyliah does all of those things.
"Kyliah is doing great," Bates said. "She is walking, talking, singing songs, answering simple questions, counting, and eating completely on her own. She is doing so many things we once didn't know if she would ever be able to do."
Kyliah recently passed her developmental testing and is meeting all expectations for her age. She has also passed all of her hearing exams. Though she was enrolled in speech therapy, after just a few sessions, her therapist was so impressed with her progress that she felt Kyliah no longer needed therapy.
Her most recent MRIs have looked good, and her doctors have been impressed with her progress.
"She still has a shunt and will need routine monitoring throughout her life," Bates said. "We know there will always be things we have to watch for, but we are so thankful for where she is today."
From the moment they learned of Kyliah's diagnosis, Bates and her husband were determined to ensure that, no matter the outcome, she would have a happy life and know she was loved. Now, they can begin to dream bigger.
That's something Bates attributes to both the medical care Kyliah received and her family's religious faith.
"We are extremely thankful for her doctors, nurses, and therapists and for all the medical care she has received. They have played such an important role in her journey," she said. "But above all, we give God the glory. Our faith carried us through some of the darkest days, and we will never stop being thankful for how far she has come."
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Contact Newsweek editors for this story: Marc Vargas and Anthony Murray.
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