A Heart for Robbie by JP Barnaby
Title ~ A Heart for Robbie
Author ~ JP Barnaby
Publisher ~ Dreamspinner Press
Published ~ 11th July 2014
Genre ~ M/M Romance
Waiting for someone else's child to die so yours can live is the worst kind of Hell
Celebrated Young Adult author Julian Holmes pits the heroic characters in his Black Heart series against all different kinds of monsters. But when a critical heart defect threatens his son’s life, he finds he has no champion. No amount of books, classes, or practice can prepare Julian for the fight to save his beautiful son’s life.
Suddenly there are hospitals, transplant lists, and the nightmare of insurance red tape to navigate. In the midst of his trouble, Julian meets Simon Phelps, the insurance coordinator for Robbie’s case. Simon lives so deep in the closet he might never find his way out, but he dreams of exactly what Julian has. Then one night, drunken need and desperation brings them together, and a new fight begins.
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Organ Donation: Are You Signed Up?
Waiting for someone else’s child to die so yours can live is the worst kind of Hell.
I have been on both sides of this equation. My daughter Kaitlyn was the recipient of a heart transplant, and my Aunt Nancy who suffered an aneurysm at 54 was a donor. I can honestly say I’d be perfectly happy to never see either side of this again. But, one day, I probably will, because I am a registered organ donor.
According to the US Department of Health & Human Services, as of the writing of this post on July 2nd, there are 123,102 people waiting for an organ transplant. Over one hundred thousand people – that’s an incredible number. Here are a couple more:
- Each day 79 people receive an organ transplant. Multiply that out – that’s 28,835 transplants a year.
- Each day 18 people die because they didn’t get the transplant they needed in order to survive. Again, multiply that out – that’s 6,750.
From the recipient side – it’s a terrifying prospect when your five month old daughter needs someone else’s heart in order to survive. Not only does a baby have to die in such a way that the child’s organs are usable, but the devastated parents of that little boy or girl have to decide to let men with knives and saws dismantle their child and harvest the tiny little pieces. And yes, harvesting is exactly what it’s called. The heart must not only be viable, but must match a number of criteria such as size, blood type, and other matching indicators to even be considered. It’s certainly not an experience I’d wish on anyone.
From the donor side – someone you love has been declared brain dead (from probably an unforeseen accident or illness). They haven’t registered to be an organ donor because it’s nothing they’ve really thought about. It’s not on their driver’s license. You don’t know what their wishes are. Then, the transplant coordinator comes with his sales pitch, trying to get you to buy what he’s selling. Someone else’s life. One of the most horrible things you can imagine has just happened to your family, and now you have to make some even harder decisions. Of course, your loved one isn’t going to need their organs, but can you really put them out there on display all empty? What about the scars from the harvesting incisions? All kinds of questions go through your head as you prepare to make that decision. Then you wait. You wait for them to come because it’s no longer a waiting game. They’re going to kill the person you love, open up their body, and take what they want.
So, what’s the right choice?
For me, that choice was very easy. I won’t need my organs after I’m declared brain dead. I have a living will that says I don’t want to be kept alive artificially. I don’t have any kids. With luck, I’ll outlive my parents. I won’t be a burden on my sister and nieces. I’ve also taken this decision off their shoulders, and I am a registered organ donor.
How do you do that?
1. Designate it on your driver’s license. On mine, there is a heart that is very clear to anyone looking that I am a donor.
2. Tell your family about your decision. Make it very clear this is what you want so they don’t have to guess when you can no longer tell them.
3. Tell your doctor, priest, rabbi, and friends. Tell anyone who would be with you during that transition out of life.
4. Include organ donation in your will, living will, advance directives, etc. Put it in writing so that your intentions are crystal clear. Save your family that heartache.
Don’t decide not to donate because of your age or a medical condition—most people can donate. For more information, check out the organ donation site at the US Department of Health & Human Services at http://www.organdonor.gov.
Excerpt from A Heart for Robbie
“Julian,” she amended. “These are Doctors Averitt and Dane, and we have been working together on your son’s care since he was admitted. The cardiac cath revealed a serious deformity, known as a pulmonary atresia, in your son’s heart. His right ventricle is underdeveloped, and several of the major arteries are also underdeveloped and misplaced. We would like to do an initial surgery to install a BT shunt to bypass the ventricle until we can find a suitable donor. Julian, there is no easy way to say this. The shunt is a short-term solution. The only way to save Robbie’s life is with a cardiac transplant.”
Julian’s own heart constricted painfully in his chest.
“I… I’m sorry. Can we back up just a little?” he started, trying to get a handle on his emotions. Even though he couldn’t feel it, he saw Liam drop a hand on his shoulder. “His heart is deformed?”
Dr. Averitt nodded and pulled a piece of paper from his briefcase. Very serious but disappointingly detached, he pushed his glasses higher on his pale nose and showed Julian a diagram. It appeared photocopied from some kind of medical textbook. His graying blond hair fell forward just a little across his forehead as he spoke.
Julian’s mind refused to focus on just one thing, jumping erratically from Dr. Averitt’s hair to Dr. Martinez’s name tag and then back to the paper in front of him. He understood, intellectually, that his distraction came from shock and lack of sleep, and he tried harder to concentrate on the diagram of a heart Dr. Averitt held, even as he counted the stripes on his shirt.
“This drawing is of a normal heart,” he said, taking a black marker and drawing a thick line near the bottom right of the heart, sectioning off a part. “In your son’s heart, this chamber, the right ventricle, is too small to be very effective. In order to help the heart pump blood the way it should, we want to put in a shunt here.” He drew a small tube from the chamber above into the smaller ventricle. “That will buy him some time until we can get him on the transplant list and find a suitable donor.”
“And a… a transplant will save his life?” Julian asked, balling his hands into fists on the tabletop to try to contain the suffocating pain. He’d sat in the Pediatric ICU all afternoon and held Robbie. He refused to consider the possibility that his son could die.
“If you elect not to put him through the trauma of a transplant, he may last a year. The stress on his heart will continue to increase as he grows, and at some point, his heart will fail. With a transplant, there is a 60 to 70 percent chance that he will live to see five. With each successive year, his chances improve,” Dr. Averitt recited, as if they were talking about the warranty on a dishwasher, not a tiny little boy.
“Even with the transplant… he could still… not make it?” Julian asked, choking on the words.
“Yes,” Dr. Averitt said quietly. “If the heart rejects, he contracts an infection, or his kidneys fail post-op, we could lose him. That’s why each day, each month, and each year he survives after the transplant, his chances improve.”
“Oh my God,” Julian whispered, finally succumbing to the tears.
About JP Barnaby
Award winning romance novelist, J. P. Barnaby has penned over a dozen books including the Working Boys series, the Little Boy Lost series, In the Absence of Monsters, and Aaron. As a bisexual woman, J.P. is a proud member of the GLBT community both online and in her small town on the outskirts of Chicago. A member of Mensa, she is described as brilliant but troubled, sweet but introverted, and talented but deviant. She spends her days writing software and her nights writing erotica, which is, of course, far more interesting. The spare time that she carves out between her career and her novels is spent reading about the concept of love, which, like some of her characters, she has never quite figured out for herself.
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