THE HYDRANENCEPHALY INFANT AND WHAT TO EXPECT
When your baby is first diagnosed as a Hydranencephaly infant it is obviously a huge shock. Not only to the parents but to the grandparents and immediate family as well. This diagnosis might be revealed whilst you are still pregnant or you might find out after giving birth or even a few months later.
At first, I really didn’t understand what Natan Shai’s diagnosis meant and only after researching on the internet was I able to learn about the situation and what it would mean for us and for him. I learned more from other parents like ourselves than I did from any of the doctors. I joined Facebook groups and contacted parents who also had Hydranencephaly kids. This was a blessing and still is today. Doctors may mean well but they go by statistics and reference books which really isn’t enough. They often give a very pessimistic prognosis. Especially as very little research has actually been done about Hydranencephaly and there is very little Hydranencephaly awareness.
Very often a Hydranencephaly infant may have an enlarged head due the build up of water on the brain called Hydrocephalus. I must emphasize that not all babies born with Hydranencephaly suffer from this though. However if this is so then you should find out about shunt surgery as soon as possible. A shunt will relieve the pressure on the brain and make your baby more comfortable but the main thing is that it will stop the growth of the head which can be fatal if not taken care of. A shunt operation today is usually very successful due to advanced medical procedures. You can expect to be hospitalized for about 5 days to a week.
For the most part, babies born with Hydranencephaly are just like any other infants when the are very small. Just love, nurture and nurse them like you would any other baby and don’t listen to any negative prognosis given to you by the medical staff. Enjoy every minute that you are given with your new baby and get in touch with other similar parents in order to build up a support system as soon as possible.
Many hydranencephaly children can be very irritable during the first year of their lives and are likely to cry a lot. The reason is not completely known but because of their neurological disorder they may have sleeping problems, seizures, high muscle tone or problems feeding (sucking). So make sure you have help and that you yourself get enough rest and eat properly.
It is very important to be in touch with a Neurologist as soon as possible. He will give you different tests to do to check your baby and see what kind of treatments can help him/her. Also if needed he may administer medicine for seizures or sleep problems. He will also refer you to other specialists if necessary. Your neurologist is probably the most important doctor your child will have so it’s very important that you feel comfortable with him and that you can ask questions freely.
Although you’ve been chosen for a difficult and unexpected ride, I promise you that your Hydranencephaly baby will be a blessing and you will find out that you have hidden resources within yourself that you never even dreamed of! Natan Shai is the best thing that ever happened to us!
Please feel free to contact me and be in touch if you have any questions. I’ll try to help as much as I possibly can.
With much love,
Hannah (Mom to Natan Shai)