In May of 2014, in an attempt to search out the very best answers for Tess, I took her to Boston to see another surgeon who is counted as among the best of the best when it comes to kids and their broken hearts. The team at Boston Children’s is amazing, and we were given some amazing options for Tess. We took those to our team at Children’s Hospital of Wisconsin and for nearly nine months these two teams bounced ideas of each other, made plans, scrapped plans, built models of her unique heart, discussed some more plans, scrapped some more plans, answered my endless questions, and finally, we decided on the approach we all agreed would be our very best chance at healing Tess’ heart completely.
They were able to do this because they are the very cutting edge. They have, literally, at their fingertips, the tools to do the most amazing things for children with complex Congenital Heart Disease. These amazing surgeons were trained to save even the most unique of hearts. Look at Tess, she was 2-years-old on the day she had her first open heart surgery. This should have happened when she was just days old. Her journey would have been so much less complex had her lungs not been damaged by all the waiting she was forced to endure. Her spirit would not have been so damaged either.
Those aren’t the ‘what ifs’ that I think about though. Her path has led her to right where she was meant to be.
The ‘what ifs’ I think about involve sweet babies like this little boy.
They had the same tiny body, a body that comes from being cared for in a place that doesn’t understand the needs of a heart baby. They do their best, I have no doubt, but they don’t know about feeding issues, the need for increased caloric intake. They just don’t have the education they need.
Tess made it, against all odds, until I could get to her. The sweet little boy pictured above didn’t make it to a family. The ‘what ifs’ of that still haunt me. Even after all this time, without even knowing his name, he still haunts me. He is one. One of thousands. What if someone had known how to care for him? What if there had been a surgeon who had been able to do something for him, something to bridge the gap until his mama could come for him? What if the orphanage had understood the very best ways to care for him and his unique heart? WHAT IF?!?
There is only so much sponsorship can do. Sponsorship is wonderful, but we need boots on the ground, in children’s native countries, to train the people who will be caring for these children. We need nannies in the orphanage to understand how to feed kids like this sweet boy, to understand the warning signs of pneumonia, to know what blue fingers and lips mean in a child with this diagnosis, and to know what it means when they cry endlessly. We need a surgeon who is trained the way Tess’ is. We need surgeons who can do the surgery at days of life instead of waiting for the parents to come, when sometimes, it’s already too late.
It can be done in China.
It could have been done for Tess.
It could have been done for this little boy. So much could have been done for him. What if it had been? What would he be today? Who would be loving him? Whose son would he be?
Little Hearts Medical is attempting to put boots in the ground in China. They’re committed to training not only the people caring for these children, but for the surgeons who will be asked to intervene to save their lives. They need your help. There are amazing programs to sponsor children for surgery, but only when the answer for their heart is more obvious, and sometimes, the repair isn’t as cutting edge as what could be done in the U.S. What if we gave every child the BEST answer? What if every child, with or without a Warrior Mom, had someone searching out the BEST answer for their heart?
It’s a possibility.
There isn’t often a face to put with this kind of mission. I’m changing that. Let the little boy above be your inspiration. Let the face of every kid we’ve lost along the way, the ones who didn’t have anyone, be your catalyst for change.
–FullPlateMom, who wants to add that if you have a child from China with CHD, Little Hearts Medical is also looking for your help with a photo project for the officials in China who have so graciously offered to help them achieve their goal of no more ‘what ifs.’ It won’t cost you a thing. Please see their Facebook post for details on how you can say thank you.