Home of the Four Trans

While I was discussing the Montessori method with the school’s head coordinator that I’m enrolling Nathan in, I found an opportunity to discuss how the Montessori method may help Justin’s cognitive, motor, and other physcial developments. Per my readings of Dr. Montessori’s translated writings, her method was developed to help children gain autonomy, especially those who are “disabled.” Justin is certainly not disabled (not in my book), but he is definitely delayed because of his heart surgeries, stroke, and poor heart function. I wanted to gain information about how the program was designed for the younger 18 month children, and how it may help Justin. In the process of learning about the Montessori method, I also learned something else.

When I mentioned Justin’s heart defects and saw her facial expression unaltered, I knew that she had some insider information.

“Does he have Tetrology of Fallot?,” she asked me.

I then explained to her, shortly, Justin’s heterotaxy and multiple heart defects.

Then, I asked her if she knew someone with ToF. She said, “Yes, my son.”

At that point, we engaged in a conversation about her son and his journey.

Q: When did he have his surgeries and how did he do developmentally afterwards?

A: He’s now 18, had his first surgery at 10 months old, second at 14 years old to replace a valve. He’ll continue to have valves replaced as they wear and tear. Although he was small for most of his life, he caught up after the second surgery as his heart became more efficient in pumping oxygenated blood throughout his body. He was able to army crawl up to 10 months, but after surgery was forced to crawl off the ground to be off his chest. No one could tell that there is anything wrong with him just by looking at him. He just graduated high school. The only developmental set back was him being diagnosed with ADD at 14 before his second heart surgery. She believes that the lack of oxygen throughout his body affected his brain activity and behavior.

Q: How is it dealing with surgery as he gets older?

A: She’s a proud, tough mama. It was never difficult for her to tell her son to get up and go when he’d rather whine in bed of his pain. She knew he was in pain, but she also knew that he could push himself. In preparation of the second surgery, she did not tell him of his surgery date. She planned a Hawaii trip and told him on the plane on the way there. By the time they got back, he had no time for anxiety as the surgery was the following day. He was upset with her, but, it worked out fine. (I think I will have to include Justin in on the plans.)

Q: Where were your surgeries?

A: The first was at Millers Children Hospital in Long Beach by Dr. Bethencourt (I was originally assigned here by my HMO), and the second was at Children’s Hospital of Orange County by Dr. Gates (I considered this surgeon). She was amazed by how much medical technology had improved between the first surgery and the second.

What I learned? I’m not alone and there are many families dealing with children with heart defects. I realize that our sons’ conditions are not the same, and neither are their prognosis (Justin’s is worse). But, with each story is so much hope. Medical technology is amazing. I am in complete awe of how much opportunity Justin has been given at life already. Three or four decades ago, he would have been sent home for “compassionate care” without a chance.

Thanks heart mamas for sharing your stories. I’ll keep praying and hoping for more miracles.

This entry was posted on Thursday, July 24th, 2008 at 2:56 am and is filed under Heterotaxy, Heart Disease, Justin, Nathan. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.