If you do a search on Google for ‘Hydranencephaly Prognosis’ the chances are you are going to get a rather dim and frightening response from most websites. That is because Hydranencephaly has not yet been studied enough by doctors who are all too quick to offer a very pessimistic opinion on this condition according to what they learned in their medical books. They do this without really studying and learning from families who have hydranencephaly children.
How Do I Find Out The Truth?
There are a couple of organisations online that are looking to change the way that hydranencephaly is portrayed and at how the doctors look at this condition. They are spreading the word about hydranencephaly in a much more positive light, with real factual information from real families.
Of course, when you first hear that your baby has this condition it is totally devastating. It is not what you expected when you became pregnant. Yes, it is a totally different journey than you had planned but with the right knowledge, support and care you will overcome the difficulties and see the wonderful privileges of being a special needs parent.
My son Natan Shai is in permanent foster care so I understand that my story is a little bit different. However, if you read Natan Shai’s story you will see that I too was shocked when I already had him home and didn’t realise the extent of his disability. Without the two organisations that helped me I don’t know how I would have managed. They gave me so much support.
My doctor also told me that Natan Shai wouldn’t make it to his first birthday 🙁 And with thanks to God, he is now NINE YEARS OLD!! (NOV. 2016). He is doing great and even with all of his multiple disabilities he has an amazing quality of life and adds happiness to my family in ways that we didn’t think were possible. We couldn’t manage life without him. He shows huge amounts of love and emotion, understands what we are talking to him about and has a very special personality. He’s most definitely the ‘king’ of the family and gets the most attention LOL.
The two places that helped me in the beginning of this journey and continue to do so until today are:
I have no words to thank the organisers of these two amazing organisations. They also have Facebook groups where you can interact with other parents and learn, offer and ask questions. A totally amazing community where we all understand one another. And no question is too ‘stupid’ or too embarrassing to ask.
If you would like to interact with me personally on facebook, or if I can help you in any way please check out Natan Shai’s page:
It will take some time to absorb your child’s prognosis but please don’t give up hope. Just treat him or her as you would any other baby and love him/her like there’s no tomorrow. Nobody can know how long our children will live for and it is definitely not up to the doctors, with all of their well-meaning, to tell us.
Feel free to comment and ask questions below.
Hannah (Natan Shai’s Mom)