Extra Digits?

My niece who was born last week has microphthalmia. She is absolutely gorgeous and was born a really good birth weight, a hearing test at the hospita confirmed that she has excellent hearing. Now discharged from hospital - she will be going to Great Ormond Street in London for some chromosome tests next week - she was born with an extra digit on each hand and foot. I was wondering if anyone else had experienced this and whether it might be symptomatic of any other syndromes/conditions?

Hi Penny,

Thanks for your feedback. They are going to the hospital tomorrow but I don’t know when they will get the results of all the tests. I’ll keep everyone up to date once I know more.



Lenz Microphthalmia condition may also have extra digits. This condition also may include mental retardation. I believe my son has LENZ…although he didn’t have the extra digits …he has mental retardation and other structural
abnormalities listed in Lenz.


Hi Jessica,

Thank you for that. I’m looking up your link to Joubert Syndrome. I know it’s very early days yet for Lily but I want to read up as much as I can. Hopefully at Great Ormond Street Hosp they’ll be able to confirm if Lily has any other conditions that we need to be aware of. I don’t want to start alarming my Brother in law and his wife but anything that we can query and raise with the Dr’s there - to rule out or rule it in - will be helpful to ensure that Lily gets the right help and support that she needs.

Thanks Jessica - Big hugs to you and Jakob,

Una x

My son has a brain disorder along with his micro that does have children born with extra digits. My son didn’t have any though. Its called Joubert Syndrome. To find out more about it go to www.joubertsyndrome.org

It may not be what your niece has but I wanted to through it out there, its diagnosed by a MRI by the way.

Hope that helps and congrats to you having a new niece!

Jessica & Jakob 3 yrs old with Joubert Syndrome, bilateraly micro, bilateral coloboma