Angel Ryan's Story

April 28, 1999-March 20, 2000

Ryan was born April 28, 1999. I found out that my 16 year old daughter was pregnant a week before Ryan was born (she didn't show at all). When she went for her first prenatal appointment, the doctor told her she was in labor and needed to get to the hospital. At the hospital, they did an ultra sound and we're concerned because they noticed a lot of fluid in the baby's skull. Neither my daughter nor the baby were doing very well so they decided to do an emergency c-section. When Ryan was delivered the doctor was very relieved. He told us he had been worried that Ryan would be hydrocephalic but was happy to see how "normal" he looked and that his hands were wrinkled and so we all went home that night believing everything was okay with Ryan.

Just as a precautionary measure, they did a CT scan the next day and I still remember the doctor coming into my daughter's hospital room and telling us that most of Ryan's brain was missing. He said Ryan would be in a vegetative state all his life, he would be blind and deaf and never recognize or know anyone, and, by the way, he would not live more than one year. My daughter, who had only seen him once by this time, completely shut down. She didn't want to see him and she wanted to give him up to the county. All of his grandparents had by this time been in to see Ryan numerous times (he was in the special care nursery) and we had just fallen in love with the little guy. Therefore, the thought of giving him up and never seeing him again just didn't seem like an option to us.

Back in the late 1980's, I had been a lobbyist for the California Department of Developmental Services and remembered that there were Regional Centers throughout the state that provided services for developmentally disabled children and adults. So, when I left the hospital that day, I started making calls and immediately got hooked up with the right people at the Regional Center and they found a residential care facility that we could put Ryan in (my daughter refused to have him at home). This option was not one that "The Grandparents" liked but we felt it was better than giving him up completely and we were assured we could visit him often at the facility as often as we liked and even bring him home for weekend visits.

Well, Ryan was having a really hard time maintaining his temperature (he got down to 93 degrees) and the doctors told us "this was it". Well, we really didn't want him to die having only seen the hospital, and the residential care facility was not available yet, and so we talked the kids into letting us bring him home for the weekend. Bringing him home was great! We had a wonderful weekend with him. When Monday came and we were supposed to take him to the care facility our hearts were just breaking. My husband, the other grandmother and me drove him up to the facility, crying all the way. The woman who ran the facility was wonderful and it was a very nice place but just not for our grandchild. Reluctantly, we left him there and went out to the car and cried some more. My husband kept saying he was going back in and busting him out. On the drive home, he kept pulling the car over on the freeway and saying he was heading back to get him. All I could think of was that we had to find some way to get the kids to agree to let us take care of him at home. Well, we had a long family meeting when we got home and finally got the kids to agree to let us have Ryan at home. As soon as we had the okay, the grandparents jumped into the car, headed back to the facility and got Ryan. The owner of the facility said it was the shortest placement she had ever had but wasn't surprised that we had come back for him. Ryan has been home ever since.

My daughter still has a hard time dealing with him. She really hasn't bonded with him, I think because she keeps hearing the doctor tell us he's going to die. Ryan has the benefit of a very supportive extended family but his arrival and diagnosis has caused dramatic changes in all our lives. I never thought I would be a grandmother at 37 but I love having Ryan so I'm dealing with the "g-word". Anyway, he has had a couple of trips to the hospital but generally is just a wonderful joy for us. He's bottle-fed and now eats baby food from a spoon. He knows our voices and loves to be hugged and cuddled. He likes toys that light up and make music but his favorite thing is food and he has a real sweet tooth. We've been thinking about getting him a t-shirt that says, "Will wake up for food" because that is when he is the most alert. He just comes alive when it's food time! Our focus is on making sure he has the best quality of life we can give him. We want to make sure he knows he is loved and cared for every moment of every day for as long as he is with us. So far, I think we've been able to do that for him.

Ryan died on March 20, 2000 after battling pneumonia.