Ok, so I have not blogged in a really, really long time. I'd like to tell you that my New Year's Resolutions included being more faithful to posting. However, I have not had a chance to really think through my resolutions yet (like everything else, I am behind). The truth is, that I wrote this note in Word, and was unable to copy and paste it into Facebook, so here we are.
My Tyler is my 10-year old nephew. He loves playing baseball, playing video games, and listening music. He is affectionate, full of life, and has a good sense of humor. On the surface, he seems like any other boy his age. He is very stubborn and strong-willed, qualities that often test the patience of his parents, teachers, and his Uncle Bernie. I strongly believe that those attributes are part of the reason why we continue to be blessed by his presence, despite some very challenging circumstances.
Tyler and Colin were born on May 28, 2000 (in the above picture by Hubball Photographics, Tyler is on the left and Colin is on the right). They were fraternal twins and fortunately Colin was perfectly healthy. Tyler, on the other hand, was born with Hypo Plastic Left Heart Syndrome (HLHS). My sister, Gayle, was very lucky in that Tyler’s condition was diagnosed in utero. She was able to make sure that the twins were delivered at Brigham and Women’s Children’s Hospital so that Tyler could be immediately whisked away to the more than capable hands at Children’s Hospital in Boston. When a baby has HLHS, the left side of the heart is undeveloped and is not able to pump oxygenated blood out to the body.
As an aside, many obstetricians do not routinely screen for CHDs, although they are the #1 birth defect. I have had many friends tell me that they have refused screening for all birth defects because they would not choose to have an abortion if the screening showed some sort of a positive result. This screening is important regardless of your religious and moral views. Had Gayle not had the screening, it is entirely possible that Tyler’s CHD would not have been detected and he would not have received the intervention necessary to save his life. Screening is vital, even if it is just so that you can be prepared to handle whatever the results may bring. For example, many babies born with HLHS prior to advances in technology utilized to diagnose and treat HLHS, were ultimately diagnosed as having Sudden Infant Death Syndrome (SIDS).
Tyler was a little over 4lbs at birth, his heart was the size of a walnut. Because he was a twin, he was smaller than most babies born with this defect and required immediate surgery. At the time of his surgery, just a few days following his birth, he was the smallest baby to ever undergo the first of three open heart surgeries, the Norwood Procedure (can you imagine performing surgery on a walnut?). The only alternative to the three procedures, is a heart transplant. I understand that now the Norwood can be performed in utero.
Before his third birthday, all three of the surgeries had been completed - the Norwood, the Glenn and the Fontan. The surgeons at Children’s basically reconstructed his heart so that it can perform all of the necessary functions. All of these surgeries were performed while Tyler was on the bypass machine, meaning the surgeons literally brought his body temperature down to the point where his heart stopped, did what they needed to do, brought his body temperature up and literally restarted his heart. I cannot even begin to tell you what it feels like when you are in the waiting room and you are told that your loved one’s heart has begun to start pumping again on its own. Unfortunately, there are many other families out there that have not been as fortunate as we are.
We have been incredibly blessed as Tyler has had very few complications as a result of his HLHS. He has a scar, vertically down his chest that is referred to as a “zipper” because he was opened up so many times as an infant and toddler.
Tyler is now experiencing some side affects that often strike individuals with CHDs. He has an atrial flutter, causing a fast heart rate (tachycardia) that has left him light-headed and dizzy. He passed out once at school as a result. This Tuesday (1/4/2011), he will once again be at Children’s Hospital in Boston. This time, he will be in the cath lab where his doctor will basically thread, thin, flexible tubes through his blood vessels to reach the abnormal tissue causing the arrhythmia. The cardiologist will then apply radio frequency energy to remove abnormal tissue and hopefully restore Tyler’s normal heart rhythm. This procedure has a very high level of success and very low risks of complication. It is minor in comparison to all that he has been through. However, I have a hard time saying that anything is “minor” when it comes to your heart. Good thoughts and prayers for him can only help.
Tyler has been through more at 10 years old, than most of us go through in a lifetime, and has come through it all with flying colors. It is my goal, in the next five years, to run the Boston Marathon as part of a team for Children’s Hospital, raising money for them in the process. They are an incredible organization and I credit them for at least part of the reason why Tyler is still with us today. I will be asking all of you to open your wallets at that point, so consider yourself warned! In the meantime, I am changing my profile pic to the one of Tyler and Colin. While it is very difficult for Tyler to go through this, it is also hard for his twin brother to stand by and watch him go through all of this.
