What is holoprosencephaly?

Baby J.P.

Holoprosencephaly is a form of cerebral palsy.

Paige and I learned that J.P. had holoprosencephaly at 23 weeks into our pregnancy during an ultrasound appointment.

It was one of those situations where no one wants to tell you anything, but they make phone calls to doctors and say they need a better look and ask you to go to another location for a better ultrasound view.

Eventually, Paige’s gynecologist broke the news and everything changed. At the time, we were at Arnold Palmer Hospital for Children and were told that Paige’s life may be in danger, and the pregnancy should be terminated immediately.

Luckily, we took some time to think about our choices, and J.P. is with us 11 years later.

We immediately began research into the diagnosis and learned about The Carter Centers for Brain Research in Holoprosencephaly and Related Malformations.

According to the Carter Centers, there are four types of holoprosencephaly, which is also known as HPE and means that the brain didn’t grow forward and divide during early pregnancy.

The four types from mild to severe are: middle interhemispheric variant, lobar, semilobar and alobar.

Children with HPE can have small heads, excessive fluid in the brain, mental disabilities, epilepsy, endocrine problems and abnormalities in other organ systems. Facial deformities are also likely.

The cause of HPE is not known.

We learned during the ultrasound that J.P. had no facial deformities. A review of his case by The Carter Centers found he was semilobar, and doctors at Florida Hospital for Children diagnosed him with hydrocephalus, endocrine issues and epilepsy.

Families for HoPE is a great resource for parents who have learned their child has holoprosencephaly. They can be found online at FamiliesForHope.org.

Parents can also contact Nancy Clegg at The Carter Centers for assistance.

 

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