Javian and Damian’s story: Bright futures thanks to expert care

When Daisy saw two dots on her eight-week ultrasound she asked right away: Am I having twins?

“I have twin brothers so I thought it was a possibility,” she says. “But when they told me ‘yes’.

I still couldn’t believe it.”

She and her husband Josue wrapped their heads around the fact that they were having two babies and looked forward to welcoming them into the world. But that happened much earlier than expected – when Daisy’s water broke when she was just 24 weeks pregnant.

Expert NICU care

Their babies, Javian and Damian, were transferred to the Level IV Neonatal Intensive Care Unit (NICU) at Children's Health℠ shortly after birth. Damian weighed 1 pound 9 ounces, and Javian weighed 1 pound. Daisy and Josue were relieved to find out their tiny twins would be in the hands of doctors with deep expertise in caring for very premature babies.

“Those first months were just crazy,” Daisy says. “I was always pumping. I would wake up, pump, make breakfast, pump, and then spend the whole day in the NICU.”

On the list of the many doctors who cared for her babies was Jessica Thayer, M.D., Pediatric Ophthalmologist at Children’s Health and Assistant Professor at UT Southwestern. She regularly screened the boys for a condition called retinopathy of prematurity (ROP).

“ROP is what Stevie Wonder had and it can cause irreversible blindness,” Dr. Thayer says. “Micropreemies (babies born before 26 weeks of pregnancy) are at higher risk.”

Getting stronger day by day

One of the scariest days in the NICU was when Damian experienced a brain bleed, which can happen when a baby’s blood vessels are still underdeveloped and more likely to rupture.

“When we heard ‘brain bleed,’ we imagined the worst and didn’t know what it would mean for him,” Daisy says.

Their nurse gently explained that sometimes, especially with more severe brain bleeds, kids experience developmental delays or cerebral palsy. She also explained that they wouldn't know exactly how Damian's brain bleed would affect him until he was older – and reassured them that his care team would be there to support his development at every step of the way.

Day by day, the boys got stronger. They were moved into adjoining rooms and Daisy finally got to hold them. The nurses dressed them up for a fall photo shoot and Daisy remembers the day they did crafts with their footprints that said “trick or treat, smell my feet.”

“It was just so cute, I still have them,” she says. “Those activities gave us something to look forward to and made us feel at home.”

Daisy and Josue hardly believed it when the boys were cleared to go home shortly before Christmas. But not long after, Daisy got a call directly from Dr. Thayer – saying Javian was due for screening and she wanted to see him sooner rather than later.

Expert eye care

That call likely saved Javian’s vision.

His screening test showed that he was developing retinopathy of prematurity. ROP causes blood vessels in the retina – the light-sensitive tissue at the back of the eye – to grow abnormally. In severe cases, those blood vessels can pull the retina away from the back of the eye, leading to vision loss or blindness.

“The good news is we have a medication that basically hits the reset button for the eye, so the vessels will start to grow normally,” Dr. Thayer says.

Now, at age 5, Javian wears glasses but he’s seeing well and keeping up with his classmates.

Different personalities and bright futures

Daisy describes Javian in two words: Smart and wild. Damian is more calm and shy.

“Damian is always telling his brother, ‘We need to behave’ or ‘Mom said we shouldn’t do that,’” Daisy says. “And Javian is like, ‘OK whatever.’ And then I find him with his feet on the wall trying to do a handstand.”

Damian did develop cerebral palsy, but he doesn’t let that slow him down.

“He runs with his walker,” Daisy says. “Even in school, his teacher tells me, ‘Have you seen the way he flips up his feet and just lets his little walker take him down the hallway?’"

Javian still sees Dr. Thayer for regular visits because sometimes kids who have ROP develop other eye issues like strabismus (misalignment of the eyes) when they get older.

“Javian is an example of how monitoring kids closely and catching any issues as soon as possible can give them the opportunity to see as best as they can,” Dr. Thayer says.

Daisy still remembers the fear she felt when her water broke so early and then seeing her tiny babies connected to so many monitors and learning some of the stats about babies born that young.

“The nurses always told us each kid is different, so just take things day by day,” she says. “Looking back, that’s the same advice I’d give another family in the NICU.”

Learn more

Children's Health provides expert, compassionate eye care for children of all ages. Whether treating a common vision problem or a rare eye condition, our team delivers the latest care in an environment designed just for kids. Learn more about our ophthalmology program.