Children with SCID are born with defective immune systems, or as in my (Nicholas Wendt's) case, virtually no immune systems at all. If left untreated, they often die before their first birthdays from diseases that other children shrug off. Pneumonia, hepatitis and even the common cold can kill. So can live immunization shots given in early childhood for polio, measles and other diseases.

SCID 's most famous victim was David Vetter, known as the "Bubble Boy" because he spent his short life enclosed in a sterile plastic sphere to protect him from the outside world. David died in 1984 at the age of twelve without ever having felt the touch of another human being. Today, early diagnosis can give many SCID children a shot at a normal life. Bone marrow transplantation, intravenous immunoglobins, medications and even gene therapy can offer hope for a partial or complete cure if the child lives long enough to benefit from these treatments. Early diagnosis is the key.

What can you do? Learn to recognize the signs, because the doctors may not until it's too late. The symptoms of SCID usually appear in the first few months of life, soon after the child has lost it's mother's antibodies. If you know a baby who isn't thriving -- who has persistent or recurrent respiratory, gastrointestinal or skin problems -- an infant who suffers from a chronic cough, multiple ear or sinus infections, rashes, thrush or stubborn diarrhea -- a baby who fails to respond to antibiotics and other medications -- consider SCID as one of the possible causes.

Pediatricians and family physicians, who are used to healthy children with normal childhood illnesses, will invariably try to treat these symptoms without searching for an underlying cause. When they do get around to digging deeper, months after the initial signs appear, they will test for more familiar diseases, such as AIDS and cystic fibrosis, first. Even the onset of PCP -- pneumocystis carinii pneumonia -- which is often the final, fatal symptom of SCID, may fail to set off the red alert. Many doctors, upon encountering PCP, automatically assume that AIDS is the cause, resulting in more lost time.

If you know a baby who exhibits any of these signs, and the experts have no answers, find an immunologist and describe the symptoms to her. Insist on a white cell count. This simple blood test, which is only rarely done before serious illness sets in, can often diagnose SCID and costs only $40.

Better yet, suggest the white cell count test to all parents of newborns. An increasing number of enlightened physicians believe it should be a standard neonatal test. While SCID is genetic in origin, most cases arise where there is no prior family history. It affects babies of all races, creeds, colors and countries. Girls as well as boys (the worst form of SCID is unique to boys). No one knows how many who reportedly die of pneumonia, infections, measles and other causes have actually succumbed to this "rare" condition. Why take the chance when neonatal diagnosis is so simple and inexpensive?

Thanks to the Internet, my parents are in touch with other SCID families around the world. A number have lost their children to this terrible disorder. Others battle daily with its long-term effects. They all say the same thing. If only they had known about SCID when their babies first became sick. If only their doctors were familiar enough with the symptoms to make an early diagnosis. Well, maybe some visitors to this page will remember what they read about SCID and go on to make a difference in a baby's life.

Thanks for taking a minute to read this. OK, so it took more than a minute. If you want more information about SCID and other "bubble babies", follow the links below.

This Primary Immune Deficiency Webring site
is owned by Marie Velardi.
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