IMMUNE DEFICIENCIES LEAVE BABY DEFENSELESS
By RHIANNON MEYERS, Staff Writer
Diego Moreno’s baby pictures are almost unbelievable.
Photos of the smiling newborn show he was well on his way to becoming an early crawler.
A year later, pictures of the Tyler toddler are taken only in his 12th-floor hospital room in the intensive care unit at Children’s Medical Center of Dallas.
His first birthday will arrive Tuesday to find him hooked to life-support machines.
“It’s very painful looking at him from the way he was from the get-go,” said Diego’s 28-year-old mother, Rachel. “I have pictures that would just freak you out. He was trying to crawl at four months. He was alert, looking around, looking at colors, smiling, ‘goo-ing’ and ‘gah-ing.’ Now, you can’t hear him make any noise.”
Diego has SCID (severe combined immunodeficiency). Most people were made aware of this disease by David Vetter, who lived for 12 years in a plastic bubble.
SCID is a group of rare immune deficiencies that leaves a child unable to fight infections, according to information from Children’s Hospital in Boston. Most children are diagnosed only after they become ill with pneumonia, meningitis and chicken pox. Many die in their first year of life, before SCID can even be diagnosed.
For those who are able to survive, life is tough. Normal environments, such as schools, movie theaters and grocery stores, can prove to be fatal.
Diego will never be able to fight off infection from viruses, bacteria and fungi. So, although his release from Children’s Medical Center is several months away, Rachel is already planning for the future of her son, who can never be exposed to germs.
The pages and pages of photographs in Rachel Moreno’s album document Diego’s quick deterioration.
“I brought pictures (to Diego’s doctors). They couldn’t believe it. Look, look at my baby. He was so happy. He was crawling. And when he was first admitted, he looked like he was dead. He wasn’t even moving because there was so much stuff attacking his system,” Rachel said.
At four months, Diego developed cold and flu symptoms and recurring ear infections. At six months, he was flown to a hospital when Rachel noticed he was panting heavily. Doctors at Children’s Medical Center diagnosed him with pneumonia, gave him breathing treatments and sent him home.
Two and a half weeks later, Rachel called 911 because Diego stopped breathing. The doctors at the Dallas hospital did special blood work, ran all sorts of tests and sent him through a magnetic resonance imaging machine, Rachel said.
At first, doctors weren’t sure what to believe, she said. They found that Diego’s lymphocytes were too low, which could have indicated cancer. They discovered that Diego had cerebral atrophy (his brain was regressing) which could have indicated abuse. Rachel said some questioned whether Diego had been dropped or mistreated.
“I was very angry and hurt by that … We love our baby. If I heard him cry five times in my life, I’d be surprised,” she said.
When the SCID diagnosis came, Rachel and her husband Luis were shocked.
Approximately one in 100,000 children is born with the inherited disease, according to hospital information. Rachel points out that she had a better chance of winning the lottery.
Even though the diagnosis came early enough to save Diego’s life, the viruses that attacked his system had already taken their toll. His ventilator and feeding tube will probably be permanent. The virus that diminished his brain could prevent him from ever walking or talking again, Rachel said.
For 72 days, Luis and Rachel couldn’t hold him. Even now, they must wear gloves, masks and gowns before touching their baby so they don’t infect him.
“It started with a cold and now it’s this,” she said.
For a long time, neither Rachel nor Luis wanted children.
Rachel was 14 when she had her first child, Jordan Jett. Back then, she mowed lawns and cleaned houses to survive.
Years later, Rachel met Luis in Tyler. They married, bought a home and waited seven years before Diego was born.
In the Moreno family photo album, there are photographs of a very pregnant Rachel at a baby shower thrown by her co-workers at The University of Texas Health Center at Tyler. She laughs and compares bellies with a male coworker.
“I was so happy. I was like a queen the whole time,” she said.
A year later, Rachel is happy for much different reasons.
Diego is still on life support, but seems to be improving. Rachel and Luis met with doctors on Friday who told them that Diego may soon be moved out of the ICU to another floor. And from there, they will begin preparations to bring Diego home.
“That’s a huge step,” Rachel said.
Part of Diego’s improvement is due to a bone marrow transplant from Rachel. Transplants of stem cells are now considered the best treatment for SCID, according to Children’s Hospital Boston. Stem cells develop into red blood cells to carry oxygen, white blood cells to fight disease and infection and platelets to aid in blood clotting. Bone marrow transplants help children with SCID rebuild their immune systems.
Rachel said her donation of bone marrow was painful and scary, but she would have done it a million times over to help Diego.
Rachel said Diego’s prognosis is good and she expects him to live a long time. The next step in her life is to begin preparations to bring Diego home in the next three to six months. She plans to home-school him.
The Morenos’ home is not equipped to maintain a germ-free environment, she said. A germ-free house must be free of anything that collects dust, including carpet, plants and animals. The house must have a filtration system equipped for an immune-compromised child, and enough outlets to support Diego’s ventilator and feeding machines.
Her home must also be wheelchair accessible, she said. Rachel said that she believes it would be impossible to renovate her mobile home to fit Diego’s requirements – and that she needs to build a house.
Diego’s illness has left the Moreno family financially strapped, Rachel said, with medical bills totaling $3 million. Luis quit his job to stay with Diego 24/7. Rachel still works at UTHCT so she can keep her insurance, but she travels back and forth to Dallas each week.
Rachel said that anyone wishing to help can contact her on her cell phone, 903-570-2814; or call her stepmother, Tammy Bratusek, at 903-858-1506 or her mother, Sherry Gilliam, at 903-526-3332.
A fund has been set up in Diego’s name at all Southside Bank branches in Tyler.