In a nutshell, Hydranencephaly is a very unusual neurological condition whereby most of the cerebral hemispheres are missing and replaced by fluid instead. This is the condition that my son Natan Shai experiences and the reason why I made this website.
I would like to share with you, my experiences raising a child with this condition and let you know what worked for us and what didn’t. I would love to interact with other parents who have a child with Hydranencephaly and it would be great if you could leave a comment or question below and I’ll be sure to get back to you asap.
WHAT IS THE DIFFERENCE BETWEEN HYDRANENCEPHALY AND ANENCEPHALY?
It is different from Anencephaly because the damage caused to the brain of an Anencephaly baby happens during conception whereas in Hydranencephaly something happens which can be very brief either during the pregnancy or birth that cuts off the flow of blood to the baby’s brain. Sometimes this is caused by a stroke, prenatal usage of drugs or a death of a twin in utero. Many times the cause is unknown. The damage usually occurs in the 2nd or 3rd trimester, but it can actually happen up to a year after birth as well. This part of the brain consequently starts to die quickly and is replaced with cerebral spine fluid.
Usually, but not always the baby’s brain stem is left undamaged. And this is the part of the brain which starts to take responsibility for emotional reactions, expression and relation to surroundings. This may sound quite surprising as it was originally thought that a cortex must be present in order to interact with the environment. Hydranencephaly children have proven this to be untrue.
WHAT DOES A BABY WITH HYDRANENCEPHALY LOOK LIKE?
An infant born with Hydranencephaly looks just like any newborn although sometimes their head might be enlarged due to the onset of Hydrocephalus (a build-up of fluid in the skull). It’s important to note that not all baby’s born with Hydranencephaly have Hydrocephalus, but if they do then a shunt must be placed as soon as possible to reduce the pressure.
Hydranencephaly can be diagnosed fairly accurately by ultrasound, but sometimes it may not be diagnosed until several weeks or months after the birth. As time goes by a baby with hydranencephaly may experience seizures, high muscle tone (CP), difficulty in swallowing or sucking, have breathing problems and gastro oesophagal reflux.
DO ALL CHILDREN WITH THIS CONDITION HAVE THE SAME SYMPTOMS?
Every child with Hydranencephaly is different just like no regular children are the same. Each child develops his own abilities and difficulties which often change as he grows.
Usually, a child with Hydranencephaly can hear very well although many have problems with their eyesight and may need glasses. Most of the children with Hydranencephaly are very aware of their surroundings and know their family members. Many can use their hands to activate switch toys and some of them can use several words. They can go to school, go on trips and basically can participate in the fun things that other children do.
I have tried to outline the basics of Hydranencephaly here. If you would like to learn more about Hydranencephaly please check out these two websites which are an excellent source of information: www.hydranencephalyfoundation.org and www.hydranencephaly.com
I would love to hear from you, especially if you are a parent or caregiver of a child such as Natan Shai.
With much love,
Hannah (Natan Shai’s Mom)