Garrett

My pregnancy with Garrett was perfectly normal with the exception that 3 weeks prior to my due date, my water broke. After a long labor, Garrett entered the world with a bang! They thought he had broken his collarbone since he wasn't moving his right arm, and he didn't have very good Apgar scores, but it appeared that those problems were transient. He had jaundice, so they took him to the NICU to go "under the lights." I remember crying when I was told he had jaundice because I so wanted to have him with me and thought my baby was very sick. In retrospect, I was acting very foolish. Little did I know that his jaundice would save his life. Garrett stayed in the NICU for 3 days when his heart started to fail. My husband and I were given the diagnosis of HLHS, Hypoplastic Left Heart Syndrome. If they hadn't caught it in the hospital, Garrett would probably have died. We were given the choice of a heart transplant but were told that the chances of finding a heart were slim, a risky three stage surgery which wouldn't repair his heart but would make it functional, or taking him home until he passed away a few days later.

We chose surgery and Garrett was air transported to a children's hospital where, at 6 days of age, he underwent his first open heart surgery. The surgery was a success and after 3 weeks, we were driving our little heart baby home to Ashburn, VA. My friends have told me how nervous they were taking their newborns home from the hospital. Well, try it with a 3 week old just out of open heart surgery for 3 hours in the car!

Garrett outgrew his first repair too quickly and needed his second surgery at 3 months. Once again a success and we were home only 10 days later. His last surgery was when he was 15 months old. All looked well and we were home in 8 days. I thought we were home free and was elated, but Garrett developed major pleural effusions and peritonitis, and was re-hospitalized in Virginia. While in the hospital, Garrett had a major stroke that left him paralyzed on the right side and unable to talk. Garrett was in the hospital for a total of 45 days on this go around, and had nursing care at home for another month afterwards.

At 17 months, Garrett was home with his surgeries complete, and we entered his toddler years. For a long time, my husband and I called Garrett "the toddler who didn't toddle." Through intensive physical therapy, he had come a very long way, from paralyzed to crawling and cruising, but he was showing no signs of walking. Friends and family would continually ask me when he was going to walk. The doctors had told us that he probably would, but he also might not. My experience is that with toddler aged stroke victims, this is the general answer you get. Around Christmas, when Garrett was 22 months, we had been told at a pediatrician appointment that we should think about the fact that Garrett may not ever walk. Well, like any toddler, Garrett will not be told what not to do, so he got up and walked across the room! He practiced the rest of the night and three days later was walking great!

At around 2-1/2 years of age, Garrett required a stent to lower his pulmonary pressures. He will need this to be enlarged at some point in the future.

Garrett is now 5 years old and getting ready to start kindergarten. We are still dealing with stroke related issues from both a physical and emotional standpoint but all-in-all Garrett is a very happy kid. He still doesn't have use of his right arm and we continue to look for therapies to help him improve. He is talking very well now and barely has any deficits remaining in this area. He is very outgoing and charms everyone he meets. He struggles with things like cutting and writing but knows all his letters, numbers, colors and shapes and can tell you what letter words start with and which colors make up other colors. We think he is pretty smart, but we are, of course, biased.

The strength and perseverance of our son is amazing, and I'm sure he has more surprises in store for us. We treat each day as a family as a gift, and for the most part, we treat Garrett like a regular kid, which is, after all, what he is!

November 2003 Update

Garrett is now 6-1/2 and in first grade. Rehab from the stroke will be a life long thing but progress continues to be made. Garrett has a little trouble keeping up with his peers. I think the heart and stroke issues give him a "double" whammy when it comes to stamina.

He is getting very handsome and is growing up so quickly...see picture. :) He is a very loving child and has enough personality for three children.

Even with all the challenges, we are just so blessed to have him.

August 2006 Update

Garrett is 9 years old now and continues to do well. We are continuing therapies for the stroke related symptoms but Garrett is doing much better than anyone expected him to. He goes to a special school and is learning at his own pace. He loves to write short comic books and is a very sweet kid. He has some stamina issues but in the grand scheme of things they are relatively minor.