My Child was Diagnosed with Hydranencephaly, what Happens Now?

My Child was Diagnosed with Hydranencephaly, what Happens Now?

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My Child was Diagnosed with Hydranencephaly, what Happens Now?

Hydranencephaly is a rare condition in which both cerebral hemispheres of the brain are absent. The hemispheres are replaced with cerebrospinal fluid filled sacs. Typically, the brainstem and the cerebellum form normally, however, in some cases the cerebellum is also absent. Infants with hydranencephaly may appear “normal” at birth; however, many have a slight to moderate distortion of the skull due to the excess fluid and pressure inside the skull. The infant will typically express spontaneous reflexes such as crying, swallowing, sucking and moving arms and legs.

Symptoms of Hydranencephaly

The time period for which the severity of the condition worsens varies among each individual child. Although some children with hydranencephaly experience symptoms such as seizures, blindness, deafness, small growth and hydrocephalus from birth, many do not display visual or physical symptoms until several months after birth. Although there is no exact known cause for hydranencephaly, it is thought to be caused by a traumatic disorder during the first trimester of pregnancy, a stroke or an intrauterine infection.

Stay Optimistic

If your child has been diagnosed with hydranencephaly it is extremely important to never give up hope. Although there is no cure, no known cause and the optimism available is extremely low, it is possible to have hope, not false hope, but hope. It is often a struggle to raise a child with this grim diagnosis; however, the key word is “raise”. Some of the most common things you will hear is that your child will never laugh, cry or recognize his parents. With time, patience most parents of children with hydranencephaly do experience laughing, giggling and acknowledgment.

Being Your Child’s Voice

Your child will not be able to speak for himself, so it is important that you speak for him. There will be hurdles; there will be people in the medical field who absolutely refuse to provide services to your child. When this happens, go to the next doctor, therapist or surgeon and eventually you will find an excellent medical team who will move mountains to help your child be safe, comfortable and happy.

It is important to understand that this is a rare condition, the medical field may be skeptical, your family and friends may be skeptical, but there is people out there who have children with hydranencephaly that will guide you through the IEP’s, the purpose of a shunt, help you understand what a g-tube is and be there to simply let you know that you are not alone in this situation. There are only a handful of support groups; however, if you do a little research, type hydranencephaly in your search engine and you will be guided to the available support groups.

 

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