Angel Benjamin's Story

August 16, 2000-April 19, 2002

Benjamin Matthew was born on August 16 ,2000 at 1:24 a.m. He weighed 6 pounds and 11 ounces and was 19 and 1/4 inches long. Although he was six weeks early, he appeared to be very healthy. He was breastfed, and did exceptionally well with it. He never had a problem with his suck and swallow reflex. At two days old, he began to develop jaundice, which lasted for six weeks. With some phototherapy and lots of lying in a sunny window at home, it finally cleared up.

After having two girls, my husband and I were very excited to finally have our boy. My husband (and pretty much his whole family) are in the construction business. So, everything Ben owned was covered in backhoes and dump trucks. Even my baby shower cake was in the shape of a bulldozer! Whenever I pictured Ben as an adult, I'd see him in his hard hat going off to work with his father. Never once did it cross my mind that Ben would be anything but what I had imagined.

At Ben's two month check up, his pediatrician was concerned because his head circumference had increased significantly since his last appointment. He went for a CT scan the next day and the results indicated Hydranencephaly. We had never heard of this before and were devastated by the poor outlook for our son. It just didn't seem possible that my beautiful baby boy could have made it this far with virtually none of his brain, but even more shocking, was that he appeared "normal". I was sure that it was all just a big mistake and that any second the doctors would be coming in to apologize for their error in judgment. Unfortunately, they never did.

The next day, we arrived at the "Barbara Bush Children Foundation" in Portland Maine for his shunt surgery. I knew that after his surgery, once the pressure in his head was relieved, that the doctors would give Ben another CT scan and discover that Ben had a brain after all, and that there was just too much fluid for them to see it before. Although I know that denial isn't a healthy way of coping with your problems, it was the only way that I, personally, felt that I could deal with this tragedy.

His surgery went smoothly, I was actually surprised that it only lasted 45 minutes (although it seemed like 45 days). We spent a lot of time talking to specialists about Ben. They told us the diagnosis was the same, Ben indeed had Hydranencephaly, and that the shunt would just make him more comfortable. I was happy that Ben would no longer be in pain, and at the same time I knew that all his pain had been passed on to me. With every word that the doctor spoke, it literally felt like he was taking away a piece of my heart. I knew, at that moment, that my life would never, ever be the same again. We brought Ben home feeling very dazed and confused. The whole way home, all I could think of were the doctors doomsday predictions.... death before his first birthday.... never progressing beyond infancy.... seizures.... feeding tubes.... I just wanted to scream. Never in my life have I ever felt so scared and ALONE. Once we finally arrived home, we immediately started researching hydranencephaly and that's when we found "Rays of Sunshine." All I could do when I read these kid’s stories was cry. Cry for them and cry for my son. On one hand, I was relieved to know that there were other children like Ben and that I had a place to turn for information and support. On the other hand, I was so disappointed because I knew that I had to accept the fact that Ben would be like these children and not like the child I wanted him to be. I knew that I had to say good bye to that little boy in the hard hat, who would protect his sisters, go to college, and grow up to have children of his own. The loss of that boy, and all my dreams for him, is something I know I will never be able to fully deal with.

  They say that time heals all wounds, and to an extent that has been true for me. As each day unfolds, I see less of the darkness and more of the light. I've learned to deny less and accept more. And now, almost 2 years later... I look at my son, and instead of seeing a boy who is disabled; I can see and touch the soul of a little boy who I love so much. My precious angel on Earth.

  For a while, the thought of someone depending on me for literally everything really scared me. But now, it only makes me proud. I'm proud of myself for being a person that I never imagined that I could be. And most importantly, proud of Ben for making it this far and accomplishing all that he has. Ben is doing far better than the doctors anticipated. He is 20 months old and very healthy (he's only been sick twice). He still eats orally, although his suck and swallow reflex isn't as strong as it used to be. He's starting to realize that he has a voice and is making lots of new sounds. He kicks his feet a lot; we always joke and say he's riding his "imaginary bike" because that's just what it looks like! He really enjoys sucking on his hands, they’re ALWAYS in his mouth. Ben is a very happy little boy, always smiling and cooing, and by no means in a "vegetative state" as the doctors suggested he'd be.

Ben has taught me so many life lessons in such a short period of time. The most significant of these lessons is not to look too far ahead. For there are far too many unknowns, but worse, too many knowns. Today is all that matters!

Written by Ben's Mom, Heather


Ben died peacefully in his sleep on April 19, 2002





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