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From the Mother of the 'Bubble Boy': His Short Life Left a Long Legacy

NASA Steps In to Save My Second Son

Our older son had passed away from this disease, so we were on alert when David was born. Doctors diagnosed his condition when he was just two weeks old — much more quickly than most children with SCID at that time. That saved his life, but to keep him from being infected with the many bacteria and viruses that could kill him, David had to live in a completely germ-free environment.

We were fortunate that NASA offered to construct a sterile space for David to live, inside a plastic "bubble" that was set up for him both at the hospital and in our home in a suburb of Houston. They also built a spacesuit for David that is now part of the Smithsonian’s collection. He grew up surrounded by media attention but never being able to be touched by those who loved him.

A Bone Marrow Transplant Leads to Lymphoma

We were always open and honest with David and explained his disease to him. As he got older, he understood that because of his disease, he had to wait until science found the right treatment for him to leave his sterile environment. By the time he was 12, bone marrow transplants were becoming more advanced, and doctors felt this was a viable option for David. While not a perfect match, our daughter was deemed an acceptable blood marrow donor, and we proceeded with the operation.

Unfortunately, a viral infection was transmitted during the transplant and this caused David to develop lymphoma. He died on February 22, 1984, at the age of 12. The only time I could touch him was as he was dying — wonderful and heartbreaking at the same time.

David’s Life Gave Life to Others

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I believe that God had a divine plan for David. His life, however short or restricted, helped scientists learn more about primary immunodeficiencies so that they could help other infants with SCID. That’s given our family enormous comfort over the years and helped us manage our great sorrow.

Dr. William Shearer, David’s physician at the time, and now a professor of pediatrics and immunology at Baylor College of Medicine, has often said that the knowledge gained from treating David not only helped the thousands of children born with SCID but also contributed to medical knowledge about treating AIDS, viral infections and cancer.

We were so grateful to Dr. Shearer, who was extremely invested in finding new options for children like David. He also was instrumental in informing pediatricians and the public about SCID. Without him, who knows where we would be today in understanding SCID and other primary immunodeficiency diseases, both genetic and acquired?

SCID Newborn Screenings Still Not Available in Many States

When David was alive, I prayed that no other child would have to experience life inside a bubble. And medical advances have answered my prayers. Today, a simple, inexpensive newborn screening test can detect SCID in newborns — in time for the babies to be treated. However, many states have not adopted this screening test, despite the fact that the U.S. Secretary of Health and Human Services recommended in 2010 that SCID screening be part of national infant screening guidelines.

If a baby with SCID is screened, diagnosed and treated early, generally within several months of birth, there is more than a 90 percent chance that the child will be effectively “cured.” Without treatment, a baby will most likely die. When SCID is detected early, patients have an expanding number of options that include bone marrow transplants, gene therapies or enzyme replacement therapies. It’s also cost-effective to detect SCID with a screening test. Each child who is treated early represents approximately 0,000 in savings to the healthcare system.

Looking Forward to Better Care for Immune Deficiency Diseases

I give as much time as I can to the Immune Deficiency Foundation (IDF) where I serve on the Board of Trustees, and to The David Center in the Texas Children’s Hospital, named for David. IDF provides education, advocacy and empowerment to the thousands of people with primary immunodeficiency across the country, and The David Center cares for children with immune, allergic or rheumatic disorders.

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We now know that there are more than 200 types of primary immunodeficiency diseases, which can occur in any decade of life. Although varying in severity, most result in increased susceptibility to infections, so early diagnosis and treatment is critical. If you or your child has primary immunodeficiency, I encourage you to learn more at the IDF website. You are not alone, and there is a whole community and a strong organization to support you regardless of where you live. Learn more about the IDF SCID Newborn Screening Campaign. I urge everyone to push for SCID screening in their state — it will save lives.

David’s life showed courage, patience and understanding. He accepted the unique circumstances of his life but waited to find the way to come out of his bubble. We prepared him to be able to socialize and eventually join the outside world. Unfortunately, that never happened.

However, I know David’s brief life was meaningful every time a mother tells me that her baby would not be alive today without David. That is the best gift that he, or anyone, could give the world.

Carol Ann Demaretis the mother of David Vetter, affectionately known to the world as “The Boy in the Bubble” because he lived inside a protective plastic isolator for 12 years to prevent him from contracting life-threatening infections. She reflects on how her son’s short, confined life has provided freedom and longevity for so many others with primary immunodeficiency diseases.

Photo Credits:

Top: Texas Children's Hospital

Middle: Baylor College of Medicine Photo Archives

Bottom: Baylor College of Medicine Photo Archives

Last Updated:6/5/2014
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Date: 16.12.2018, 09:36 / Views: 82343