12 Days: Rio Grande City mother cherishes time with disabled daughter

Alison Cavazos was given two hours to live when she was born.

Her mother, Juana, did not know until after she had given birth that Alison’s fetal brain had not fully developed, a birth defect known as holoprosencephaly.

Improbably, Alison survived Sept. 2, 2006, at Starr County Memorial Hospital. In fact, she’s outlived all the grim predictions of the doctors and specialists who treat her on a routine basis.

As Alison continues to prove her doctors wrong, she also suffers from several serious medical conditions stemming from the birth defect.

But one constant remains: the presence and unyielding optimism of her mother, Juana.

“The doctors say I’m too attached to her. What can I do? It’s my daughter,” Juana says in Spanish in the intensive care unit at Rio Grande Regional Hospital in McAllen one cold, rainy Friday afternoon. “They all tell me just to be aware that one day, she might not wake up.”

Alison was rushed to the ICU from the family’s Rio Grande City trailer Nov. 19 after a five-hour seizure in the middle of the night. Alison is in and out of the hospital because of the seizures, which are due to high sodium levels and abnormal brain activity. She also has occasional bouts with pneumonia.

But the baby sleeps peacefully this afternoon, no longer in pain and heavily sedated. Her mother runs her hands through the child’s curly, dark brown hair in the shaded room. She will be able to take her home to Alison’s two brothers, Oscar, 13, and Luis, 6, in four days or so, when the medicine wears off.

“Right now she looks very comfortable,” Juana whispers, as she smiles looking down at Alison, snuggled underneath a pink blanket. “You can tell it’s a comfortable sleep. She looks relaxed and calm.”

CATCHING UP

The birth defect Alison suffers from is fairly common, but the medical field is just starting to catch up with it.

The cause is currently unknown, though one risk factor identified is maternal diabetes, which Juana suffers from. Several genes have been identified to play a role, as well.

Since many pregnancies with a fetus diagnosed with HPE end in miscarriage, the frequency of HPE among all pregnancies could be as high as 1 in 200, according to the Carter Centers for Brain Research in Holopronsenephaly and Related Malformations at Stanford University.

Studies indicate that only 3 percent of the most severe cases survive to delivery and the vast majority of these infants do not survive past 6 months, according to the centers.

More recent research suggests a broader range of outcomes for infants surviving HPE, depending on severity, according to the National Human Genome Research Institute.

Alison suffers from a moderate case of HPE. Her brain did not fully grow forward and divide as it is supposed to during early pregnancy, which has caused facial deformities like cleft lip and a flattened nose. Juana said a plastic surgeon will soon repair those deformities.

Dr. Nancy Clegg, director of the National HPE Project for the Carter Centers, said many smaller hospitals and clinics around the country may still be misinformed about the recent advances in research and treatment for HPE.

“In the past the survival rate was much lower, but a lot of that has changed” Clegg said. “We are currently seeing children (suffering from HPE) in our clinics in their teens and 20s and even being discharged because they’re adults.”

In fact, Clegg said they often hear stories from patients about doctors having given them only hours to live when they were born.

But HPE survivors still require a lot of care. And in Alison’s case, most of that falls on her mother, Juana.

But it is the other medical side effects from the defect that worry Juana most.

‘I’LL NEVER GET TIRED OF CARING FOR HER’

Juana’s days usually begin at 5:30 a.m. when she wakes up to give baby Alison her medications. She then brushes Alison’s teeth, feeds her more medicine and then gives her a bath.

That’s when Alison usually starts convulsing.

The seizures vary in length, Juana said, and sometimes they are so severe the family needs to rush Alison to the ICU — like they did in late October and again in late November.

Every time, though, Alison is so fatigued afterward she falls asleep.

But Juana has to keep going. She gets her boys ready for school and, when Alison wakes up, feeds her more medication and gives her a nebulizer treatment.

The routine begins an hour earlier three days out of the week. Those are the days Juana needs to take Alison for physical, occupational and speech therapy in Edinburg.

Virtually all of those who survive HPE have some delay in development of motor and communication skills.

Alison cannot walk or crawl; she can only move her torso and her head. She cannot speak or communicate; she only makes sounds and gestures that Juana has learned to read. And glaucoma keeps her from seeing anything but mostly shadows and silhouettes.

Developmental delays and the cleft lip also keep her from eating normally, so she needs to be connected to a feeding tube attached to her side. The machine — along with an oxygen tank — is next to her bed at home.

Juana has learned from the nurses at the hospital and at physical therapy how to care for Alison. Everything they do at the hospital, Juana needs to do at home.

Occasionally, Juana will catch a nap with Alison or will manage to run some errands while a provider watches over the baby. But those times are few and far between.

Juana does not mind, though. Caring for the child has become her life. Her two boys and her husband, Juan Amando Cavazos, know that the “princess” comes first.

“My 24 hours are completely booked with her,” Juana says. “But now, I feel more fulfilled. More complete. Yes, I get tired. But I’ll never get tired of caring for her.”

A physician assistant who has cared for Alison over the past three years can attest to the mother’s round-the-clock dedication.

“She has been that child’s main advocate,” said Iris Guerra, who works in the office of Dr. Juan Aguilera of Rio Grande City. “She has done so much for (Alison) and that’s why she’s still here.”

‘THE MOST AMAZING GIFT’

Alison’s condition demands time and money. Juana can provide the time but, subsequently, she relies on Medicaid to cover the expensive treatments, visits to three different specialists and the frequent ICU visits.

Juana receives a Social Security check for Alison, which she stretches every month to help pay the lease on her property and to cover expenses for the two boys.

She sells tamales occasionally to scrape together some extra money.

“I don’t know how I do it, but I do it,” she says from her living room. “It’s a surprise to me.”

Alison’s progress over these three-and-a-half years is also a pleasant surprise that the family cherishes.

She survived a case of pneumonia earlier this year. She’s also survived a serious heart condition that developed early on.

“The doctors told me she wouldn’t grow or gain weight or even be able to roll over and she’s done all three,” Juana said. “Everything I was told she wouldn’t do, she’s done.”

Alison has lived and thrived well beyond the expectations of the doctors that have treated her. Juana and the family hold onto a cautious hope that their days with her — however difficult at times —– will continue.

The medical advances in the field withstanding, Alison’s future is still uncertain and her condition is tenuous.

“She’s just so sensitive in a sense that if she gets a bad case of bronchitis, it might go wrong,” the physician assistant, Guerra, says. “But so far, so good. She always responds well when she gets treatments and surprises everybody. She’s just a fighter.”

From Alison’s bedside in the ICU unit, Juana says her one wish for Christmas is that her daughter not be in pain, that she continues to progress and advance and, most of all, that she can be with her “princess.”

“Spending the day with her is beautiful. Her smile and everything,” Juana says. “She is the most amazing gift God has given me.”

Nick Pipitone covers McAllen, PSJA, the Mid-Valley and general assignments for The Monitor. He can be reached at (956) 683-4446.