Goldenhar Syndrome and Gulf War Veterans

Rare disorder may be more prevalent in their children

The data began to trickle in beginning nine months after the end of the Gulf War. Veterans who had fought in the Persian Gulf were reporting that their children were being born with birth defects, and it seemed to be at more than the rates that occur naturally by chance.

One of the rare disorders that seemed to be more common for the veterans' children was Goldenhar (pronounced golden-hair) syndrome. Medically, this is called oculo-auriculo-vertebral (OAV) spectrum. It has a wide range of symptoms and may look very different from one child to the next. However, it tends to produce:

• Face smaller on one side than the other and facial deformities
• "Oculo": Eyes abnormally small or part of upper eyelids missing
• "Auriculo": Malformation of the ears, such as being smaller than normal and with outgrowths of skin
• "Vertebral": incomplete development, fusion, or absence of certain vertebrae
• Other internal problems with heart, lung, kidneys, or intestines

Department of Defense study
In 1995, in response to Gulf War veterans' concerns about the unusual number of their children born with Goldenhar syndrome, the Department of Defense sponsored a study. The researchers looked at the birth records of all babies born between 1991-1993 in military hospitals after the Gulf War. The results were:

• Infants of Gulf War veterans: 5 cases of Goldenhar syndrome (rate = 14.7 per 100,000)
• Infants of veterans who did not deploy to the Persian Gulf: 2 cases (rate = 4.8 per 100,000)

The authors of the study stated, "The few affected cases . . . require these results be interpreted with caution and do not exclude chance as an explanation for these findings." Problems with the study were that it only included births in military hospitals, and did not include children who were diagnosed with Goldenhar syndrome later on.

Birth Defect Research for Children
A nonprofit group originally called Association for Birth Defect Children, now Birth Defect Research for Children (BDRC), started a National Birth Defect Registry in 1990 to collect comprehensive data on birth defects. Information is reported to the registry by parents. Using its Registry data on Gulf War veterans' children, BDRC found that:

• Between 1991-1997 there were 15 reported cases of Goldenhar syndrome among children of Gulf War veterans (includes births at both civilian and military hospitals)

One problem with the BDRC data is that the total number of births is not reported, so the actual rate can't be determined for the 6-year period involved.

What it all means
BDRC reports that the rate of Goldenhar syndrome in the general population is 5 per 100,000. More studies are needed to see if Goldenhar syndrome occurs more often than that in the children of Gulf War veterans, as it seems from the data collected. Also, researchers should examine the rate for different years, to see if perhaps in the years immediately after the war more cases occurred, or if the rate increased a number of years later.

Information for this article was taken from:
- Araneta, M.R., Moore, C.A., Olney, R.S., Edmonds, L.D., Karcher, J.A., McDonough, C, Hiliopoulos, K.M., Schlangen, K.M., & Gray, G.C. (1997). Goldenhar syndrome among infants born in military hospitals to Gulf War veterans. Teratology, 56(4), 244-251.
- DefenseLINK News 12/1/97: Department of Defense Goldenhar Syndrome Study Published.
- GulfLINK Frequently Asked Questions.
- "Gulf War Babies: The Legacy of War." Available online at WideSmiles.org.