After an uneventful pregnancy and birth, Tiffany Green was looking forward to bringing son, Parker James Cameron, home to bond with her and his sisters. But on April 13, a week after Parker’s birth, Green learned something unsettling. Parker had no immune system in the middle of the COVID-19 epidemic.
“I was shocked,” Green, 28, of Strasburg, Virginia, told TODAY. “It was a completely normal pregnancy. It wasn’t until it was picked up on the heel prick that we found out about his severe combined immunodeficiency (SCID).”
While Green was worried about Parker’s diagnosis, he recently underwent treatment and is doing so well he was able to leave the hospital early. She is sharing his story to raise awareness of SCID.
“The was the last thing that was on my mind. I didn’t even know what it was,” Green said. “People need to know more about this. I never realized how serious it was.”
What is severe combined immunodeficiency?
SCID is the name of a “group of disorders” that contribute to children being born without enough T-cells. While the immune system relies on several types of cells to protect the body from infection, the T-cells “are the organizers of the immune system,” said Dr. Blachy Dávila, a blood and bone marrow transplant specialist at Children’s National Hospital in Washington, D.C., who treated Parker.
Since 2010, doctors have been screening children for SCIDs and that has allowed them to extend their lives.
“Kids are prone to infections and actually over 90% of them are going to die in their first year of life due to an overwhelming infection unless we do something about it,” Dávila said.
Luckily, it’s “quite rare,” occurring in about 1 in 60,000 births. It is genetic, but in about 15% of cases doctors do not understand what gene causes the SCID. A bone marrow transplant is one form of treatment that can give children a chance to live a long, healthy life.
“The only way to really prevent infection is to give the kid an immune system,” he said. “The only way we can do that is actually replacing their blood with someone else’s blood that has white blood cells that work normally. That’s where the transplant comes in.”
For Green, hearing that her infant son needed to undergo chemotherapy and a bone marrow transplant just months after his birth was overwhelming.
“It was really scary,” she said. “The biggest thing for me was having this new baby and looking at him and not really knowing if our time was going to be cut short.”
But he didn’t have any infections and he was cleared for the procedure as soon as they found a bone marrow match. Green’s daughters, Natalie, 12 and Avery, 6, should have been “the best possible” matches but they were not and Parker needed an unrelated donor. At the end of June, he returned to Children's National Hospital for chemotherapy, to kill his remaining T-cells, and the bone marrow transplant, to give him a new immune system.
“I held him all the time because he was not feeling well. He got a little spoiled and attached,” Green said. “He stopped eating for a while. He was down and out.”
But he slowly started smiling and cooing again and acting more like himself. What’s more, the transplant was overwhelmingly successful.
“He is actually 98% donor cells, which means he has 98% of the donor cells and only 2% of his original cells,” Green said. “He actually took to it very, very well.”
Sometimes family needs to stay close to the hospital for three months after the transplant just to make sure everything is OK, but Parker was doing so well he went home.
“It just feels great having us all under one roof and I finally feel like I got my family back,” Green said. “We’re just trying to make up for all the lost time.”
While Parker will have to stay somewhat isolated for the next few months as his immune system strengthens, he will eventually be able enjoy life without risk of him becoming fatally ill.
“He should be able to do everything that any other kid his age can do,” Dávila said.
'Blessing in disguise'
Even though finding out her son had no immunity during the epidemic felt stressful, Green said there was an unexpected silver lining.
“The whole world is taking precautions and masking and isolating and social distancing, that helps him,” she said. “I’m not sure if it was a blessing in disguise or if it was even more scary.”
Green has been sharing Parker’s journey on Facebook to raise awareness of SCID.
“I never realized how serious it was,” she said. “I’ve actually had people message me on Facebook saying, ‘Hey it’s really nice to meet you. My child has gone through this and now he’s doing much better.’”
And, others have said they have donated bone marrow through Be The Match. Such donations save lives.
“I hope more people decide to donate their bone marrow,” Green said.