Aaron's Story

I was really sick in the 1st trimester I had lost 20lbs due to morning sickness and I also had infections of the kidney and bladder, had the flu close to getting pneumonia.  But once I was 3 1/2 months the morning sickness stopped. I felt better at first I didn't pay too much attention to it because during my other pregnancies I was the same but not as severe. I felt there was something wrong with this pregnancy.  When I got the ultrasound for the measurements I knew something was wrong they kept measuring the head and then they had other doctor to come in to look at it. He did the same thing. They didn't tell me anything until a week later after my doctor got the results.  They told me that his head was larger than normal and he was missing the Cerebellum.  They didn't tell me anything else they sent me to get an MRI and they said that they were amoralities on the brain.  So of course I was hit when lots of things, that he may not live though the pregnancy or he may be born but then die right after, and they still didn't know what his condition is.

When he was born of course at the time the kept reminding me of the same things as before that he make not come out alive and the cord may cut off his breathing because he was a Frank Breech and I was having him natural. As soon as he came out he weighed 7 lbs. 2oz. They couldn't measure him because his legs were sticking up.  The NICU nurses quickly got him and took him before I
could see him, and as soon as I heard his cry I was Blessed. Now it wasn't a big cry like a regular baby but it was a cry.  He spent 1 week in the NICU. He got more tests done. He got an MRI and they told me that it was more serve than they thought. He was missing 90% of his brain and I was so in shock.  I couldn't believe that. I wanted to see for my self so they show me picture of his brain and I was lost in words. They told me the only thing intact was his brain stem and they told me that he wouldn't have long to live, that he wouldn't pass infancy so they said the best then to do for him is to comfort him, so I decide to put him into HOUSTON HOSPICES where they have been so helpful
to me and my family.

After a month his head started to get big and he started sleeping more than usual and didn't eat like he wanted.  He just wasn't him self so I ask the group about a shunt and they of course say (DO IT) it will make a difference and sure enough it did.  He  had it put in on 11/3/07 and it's now 11/21/07
and in the short time he put it in he was a new baby he is more alert, awake, & eating more.  But the only thing we are looking into right now is his spiting up.

And that is Aaron Trebor Monroy (ATM) story.
 

In hospital for his shunt surgery

 

 

 

Subscribe to the Hydranencephaly Mailing list

August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

Please report any broken links or missing photos to angelbearmom@shaw.ca