If your child has been diagnosed with Hydranencephaly you are probably in a state of shock and confusion and are looking for as much information as you can on the subject, as well as support. One of your biggest questions is going to understandably be “What is Hydranencephaly life expectancy?”
Unfortunately, most doctors tend to give you the most gloomy picture as to what the future holds for a baby with this diagnosis. This is because not enough research has been made on the subject.
Way too many children have been given no hope before their journey even started! This not fair and untrue!
From my understanding, the oldest living person with Hydranencephaly is now in their 30’s! A far cry from what the doctors are telling us regarding the prognosis of these amazing children 🙂
Natan Shai has many online friends who we met through the Global Hydranencephaly Foundation. This organization has a private Facebook Group and I highly recommend joining it. You will meet many families like your own and get to ask any question you like from people who are in the same boat as yourself. No question is too silly, only the question not asked 😉 Personally, I have met some of my greatest friends in this online group. Another great resource is ‘Rays of Sunshine’ who have a very informative website about Hydranencephaly. For more resources please check out our resource section.
Each child is different from the next and each remaining brain formation is different as well, this is why a definite prognosis cannot and should not be made. Just take your child home and love him or her just as you would any other child. You will be surprised in so many ways. In fact as hard as it may seem to believe, what may have been such a shock for you, in the beginning, will most likely become your biggest blessing! Natan Shai is the best thing that ever happened to us!
As each day goes by you will learn about your child’s needs and learn what he or she likes and dislikes. You will see his/her personality blossoming right before your eyes and for sure you will be totally surprised as to what a child without a brain is actually capable of achieving!
Natan Shai was supposedly not to be able to recognize faces, show emotion or feel pain. This is so far from the truth – as you can see from the pictures.
My advice is: don’t listen to the doctors but instead be in touch with other parents who have children with the same diagnosis and learn from them. With all of their great intentions and years of learning, unfortunately, doctors are still quoting outdated textbooks regarding Hydranencephaly and the prognosis’s given are simply not true most of the time. All they do is bring you down and make you lose hope. This is the last thing that your child needs.
If you have any questions or just want to connect please feel free to comment below or send me a private message.
Wishing you all the best on this very different and unexpected journey (you might like to see this).
With Much Love
Hannah (Natan Shai’s Mum) xx