Tragedy
Eight seems to be Justin’s number. He was born August 8th at 3:08PM, placed in bed #8 in the NICU, and now will have his heart catheterization on January 8, 2008. The surgery is yet to be scheduled (playing phone tag), but we are anticipating end of January to beginning of February…maybe the 28th?
After the meeting with his cardiologist on Monday, I realized that there is so much hope for the future, Justin’s future, despite the many unknowns about congenital heart disease. To gain better understanding of the leaky valve issue, I questioned the doc about what it meant to have it. Although it may never be fixed, it may be maintained with medication, diet, and other techniques if the Glenn does not bring the severity of its leakiness down a notch. The presence of the leak will compromise how well he does with the Fontan (third, and final stage of the palliative surgeries). In the long run, that leak will cause his heart to stretch, enlarge, and, with that, new problems to conquer. He will, more likely than not, need a heart transplant one day when his heart begins to give out (whether he’ll receive one is another story). I pray that the Glenn will do its part in releasing some of the pressure off that leaky valve. Will you pray for baby Justin, too?
I know, the answer is not perfect. It does not tell us all that we want to know of the future. It does not tell us how far and how well Justin’s going to make it. But, don’t be sad–for him or for us. His story is not a tragedy, nor is our story with him in it. On the contrary, this story is full of hope.
Thirty years ago, Justin may have received only compassionate care after being born, as we would have had only the option of waiting those dreadful few days or weeks before his heart would fail. Now, with the advancing medical technology and knowledge, Justin has had and will continue to have a chance to live a longer life. With further research, the quality of his life may be improved as well.
With his own life, he breathed purpose and meaning into ours. We’ve embraced Justin’s condition, and have been profoundly moved by his very existence. For us not to accept this life changing event as fuel to promote the issue, and to make a difference in the lives of all those who are or may be affected by it would make this a life’s lesson unlearned, a tragedy. Justin’s life has purpose, and we will help him live up to it. His life is an example of the endless possibilities the future holds for medicine and its technology.
We’ve got quite a journey ahead of us…I hope. Getting through the surgeries is only the beginning. How well he lives beyond those depends on the research conducted to better understand how the surgeries affect his brain development (or if brain development is of issue prior to surgeries), how to improve his feeding and ability to gain weight, and how to deal with behavioral problems. Fast forward 10, 20, 30 years, when that leaky valve gives out, further research and experimentation may find an answer to fix it. There is no exisiting “cure” for congenital heart defects. We often speak of the day when hearts may be grown using his own stem cells, then have that transplanted into his body (We banked his cord blood with Viacord). For now, we can work towards developing a better future for Justin with the heart he has, enabling him to live as “normal” and fulfilling of a life as possible.
Visit California Heart Connection to learn more about congenital heart disease, and how you can help better the lives of children and adults like Justin. Or, The Children’s Heart Foundation, to learn more about other children who have congenital heart defects, and how you can contribute to its research.