Having a child is one of life’s greatest gifts. But, imagine having that gift taken away after only nine months.
That’s what happened to one College Station family.
Their seemingly healthy baby boy died in March from a disease rarely diagnosed, but treatable.
Now his mother is on a mission to raise awareness and save babies lives.
“He was just a really sweet, sweet little baby,” mother Jennifer Garcia said.
For the first seven months of life her son Cameron was perfectly healthy, but then he got a cold that didn’t go away.
“They noticed he sounded a little wheezy and of course immediately you think the head cold has just settled in his chest,” Garcia said.
Doctors diagnosed him with pneumonia and when it didn’t get better he was taken to Houston. After three weeks of tests doctors determined he had Severe Combined Immunodeficiency or SCID also known as the Bubble Boy Disease.
Cameron couldn’t develop a normal immune system and two weeks later he was gone.
“We had to literally make the decision what do we do from here,” Garcia said. “We had to hold him and take him off the ventilator and it was a very hard decision that no parent should ever have to make.”
SCID can occur in about one in 40,000 newborns. Although rare, if identified early, babies like Cameron can be treated with a bone marrow transplant.
“These kids can get cured, they can live a normal life,” Dr. Susan Pacheco with the University of Texas-Houston Medical School said.
Pacheco is the Houston immunologist who diagnosed Cameron.
“This is a fatal disease if it goes untreated and the outcome for after a transplant is much higher the early that you diagnose and the sooner that you treat,” Pacheco said.
A simple blood test at birth, costing between $5 and $7 dollars, determines if a newborn has SCID.
But the problem is, the test is not part of the Texas newborn screening panel. Cameron wasn’t tested at birth.
Jennifer is fighting to change that.
“I feel like I left the hospital running out the door saying how could this happen and I don’t want this to happen to another baby in Texas,” Garcia said.
Jennifer is one of many working on getting SCID added to the list of screening tests all Texas newborns are recommended to get. Five states currently test for the disease.
Florida’s governor like others in the past recently vetoed a bill, citing economic reasons.
“When you want to talk about money. Cameron’s medical bills came to almost one million dollars. How many babies could you have screened for a million dollars,” Garcia said.
Jennifer says she won’t give up until all babies are given a chance at survival. A chance Cameron did not get.
An opt-in pilot program is being conducted in Texas and the College Station Medical Center is on board. Starting in the fall or winter, the College Station hospital will start testing babies for SCID.
The Texas Department of State Health Services is conducting the pilot program. Results will help determine the best way to test for SCID when funding is available to add it to the Texas newborn screening panel.
Jennifer is also working with local lawmakers, hoping one will carry legislation into the next legislative session.
Click here to learn more about Texas pilot program
If you have any questions for Jennifer Garcia, you can reach her at firstname.lastname@example.org.