Is SA/CRS Caused by Diabetes?

The National Organization for Rare Disorders tells us:

One risk factor that has been identified for caudal regression syndrome is maternal diabetes. Caudal regression syndrome occurs with greater frequency in women with diabetes than in the general population. Approximately 16 percent of affected individuals of caudal regression syndrome have occurred in children of women with diabetes. The exact reason why women with diabetes are at a greater risk for having a child with caudal regression syndrome is not fully understood.  

The environmental factors that play a role in the development of caudal regression syndrome are unknown, although numerous different potential factors have been suggested including alcohol, retinoic acid, lack of oxygen (hypoxia) and amino acid imbalances. More research is necessary to determine what environmental factors play a role in the development of caudal regression syndrome. 

See the full article here.

It is important to note that “risk factor” does not mean “cause.” Mothers with diabetes might be told by doctors that their diabetes “caused” the condition of sacral agenesis/caudal regression syndrome (SA/CRS). Parents connected with iSACRA have heard this phrase from doctors and find these word extremely painful to hear. No parent wants to be blamed for an unexpected medical condition in their newborn. Clearly, most children with SA/CRS do not have mothers with diabetes. However, it is also clear that there is some kind of connection between diabetes and sacral agenesis. This connection is not understood, and implying a parent is somehow to blame for the condition, diabetic or not, is a misrepresentation.

It is difficult to receive a diagnosis and not know the cause. It is natural for new parents to want to know the cause, but knowing it would not change the condition. In the case of SA/CRS, an unknown cause means there is no one to fault and no one to blame. It happened, and now life is not quite what was expected. However, life can still be full of joy, discovery, and love. People with SA/CRS can achieve great things. iSACRA is here to support you through the process of understanding this condition and its challenges and to rejoice with you as your child amazes you with each accomplishment.