Back to Ask the Diabetes Team Ask the Diabetes Team

From London, United Kingdom:

I am 15 years old and as an infant, I had a sub-total pancreatectomy because of nesidioblastosis which has left me with type 1 diabetes. Are there any tests I need to go through before I can have children? If I had children in the future would they be at a higher risk of developing nesidioblastosis?


The recommendations to you would be the same as for anyone else with type 1 diabetes. Essentially, you should be in good glucose control prior to conception and maintain that throughout the pregnancy. You should also be taking extra folic acid (1 mg/day) to reduce the risk of neural tube defects.

Nesidioblastosis is an autosomal recessive disorder. This means that if you have a child with someone who carries the gene, but is not affected, then the risk of a child with nesidioblastosis is 50% and of being a carrier (no disease) is also 50%. However, if you have a child with someone who does not carry the defect, then your child would only be a carrier. Nesidioblastosis is rare (I do not know the incidence in the population), thus the chances of having a child with someone who is a carrier is low. I would strongly suggest that you meet with a genetic counselor before you decide to have children to discuss this further.


Original posting 22 Nov 2001
Posted to Family Planning


  Back to Ask the Diabetes Team Return to the Top of This Page

Last Updated: Tuesday April 06, 2010 15:09:28
This Internet site provides information of a general nature and is designed for educational purposes only. If you have any concerns about your own health or the health of your child, you should always consult with a physician or other health care professional.

This site is published by T-1 Today, Inc. (d/b/a Children with Diabetes), a 501c3 not-for-profit organization, which is responsible for its contents. Our mission is to provide education and support to families living with type 1 diabetes.
By using this site, you agree to our Terms of Use, Legal Notice, and Privacy Policy.
© Children with Diabetes, Inc. 1995-2018. Comments and Feedback.