ROUND ROCK, Texas (KXAN) - Anjali Abraham remembers when she brought her son, Jacob, home from the hospital right after he was born.
He had been diagnosed with Tetralogy of Fallot, which impacts blood flow through the heart, and would need open heart surgery at just two and half months old.
"I used to actually just stare at him at night - just watch him in his bed - I used to watch his heart go up and down - just watch his breathing," said Abraham.
She explained that Jacob had his second open heart surgery just a few years ago. He's had 15 angioplasties since he was born.
"He actually has an additional problem with his lungs. He has narrowing of the arteries in both of his lungs. So, the oxygen doesn't get to him... as more quickly," she said. "So, I have to be really careful with Jacob."
Abraham said his condition puts him at high risk for COVID-19. He's under 16 and not approved for the vaccine yet and Abraham doesn't fall under any of the categories eligible currently.
"It's just really hard that we're not given a priority to get the vaccine because our children's lives are on the line," said Abraham. "It's just really scary. I have to keep myself safe to keep him safe."
COVID-19 impact on medically fragile children
Jacob is considered medically fragile which means his health condition is chronic, long-term and surfaced around the time of birth.
"Many of these children are at risk for respiratory infections or feeding difficulties or lack of oxygen with subsequent seizures," said Dr. Sarmistha Hauger, Chief of Pediatric Infectious Disease at Dell Children's Medical Center.
Dr. Hauger explained that recent data shows that children who are medically fragile are at greater risk if they get the virus.
"Children that are medically complex - children that have other health problems - tend to get sicker, tend to end up in the ICU more, tend to need more support," said Dr. Hauger. "But the outcome is also better than adults."
A study of forty-six North American pediatric ICU's, showed that during late March and early April of last year, 83% of medically fragile children with the virus ended up in ICU," according to JAMA Pediatrics, a medical journal.
Dr. Hauger said that Dell Children's Medical Center is looking at its own data now and studying the impact of the virus on this particular group of children.
"Many of these children have home health workers in their home. They're coming out, they are immunized, yet the parents that are taking care of the children are not you know, and so should they be if they are at greater risk? I think there is some argument to that," said Dr. Hauger.
Other states prioritizing family members
Some states have moved to prioritize family members of medically fragile children including most recently Tennessee, California, Oregon, Illinois, South Carolina, New Hampshire and Wisconsin, but not Texas.
"The recommendation from the Expert Vaccine Allocation Panel was to prioritize in Phase 1B people who are 65 and older and those 16+ with underlying health conditions that put them at a greater risk of severe disease, hospitalization and death because they are the most at risk," said Chris Van Deusen with the Texas Department of State Health Services. "EVAP will make recommendations for further vaccination priorities as we move through the process."
What's confusing some families is that according to the Centers for Disease Control and Prevention they should have already qualified for the vaccine because their children need nursing home level of care.
"Healthcare personnel include all paid and unpaid persons serving in healthcare settings who have the potential for direct or indirect exposure to patients or infectious materials," said the CDC online.
DSHS explained on its vaccine information page that if a medical condition is not listed under the current group eligible then people can talk to their providers to see if they still qualify for the vaccine.
The website also said that spring is the best estimate of when vaccines will be available for the general public. Availability will depend on vaccine supply.
Dr. Hauger who is also the co-chair of the Texas Pediatric Society's Immunization Committee said they will be discussing the impact of the virus on medically fragile children.
"I actually think that this is a good thing to discuss with this new data that shows that medically fragile children are at greater risk. We can certainly make our recommendation to the health department. It all has to do with supply," said Dr. Hauger.
Vaccine peace of mind
Claire Milam and her son Julio Solismilam finally qualified in the last round of vaccines and just got theirs, but it took them weeks to get an appointment.
She said the 18-year-old has down syndrome and a congenital heart defect. He had heart surgery last May.
"He literally needs a nursing home level of care," said Milam. "It just gives kids like my son a better chance."
Milam explained that Julio's home healthcare givers got their vaccines already and she was able to get hers because she has an underlying health condition.
She's now advocating for other families to be included in the vaccine rollout.
"That kind of fear that I'm getting the groceries and that I'm going to catch something from somebody that I crossed the path of just being in the wrong place at the wrong time - that diminished," said Milam.
Abraham understands and is hoping for the same relief, so she doesn't expose her son.
"I worry everyday - every interaction that I have - every time I leave my home. I'm always wearing a mask, maintaining my distance - I've done everything," said Abraham.
Dr. Hauger said until parents can get the vaccine, they should consider wearing a mask while taking care of a very vulnerable child who is ill, continue good hand washing, social distancing if possible and limiting interaction with people from outside their family.
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