Ask the Doctors: Jaya

"My son, Jaya, is an amazing kid," says Kristi. "He always lights up the room. He has gone through so much for only being 3 1/2. Jaya has a rare birth defect called caudal regression syndrome, and his spine didn't form properly. He's paralyzed from the waist down. His legs are not formed normally." Jaya doesn't have hip sockets, and his knees and feet don't bend. Kristi says, "I would like Jaya to have the bilateral knee disarticulation, so they would amputate his legs at the knees. My husband, Jason, thinks we should wait on the surgery."

"I don't want Jaya to have the amputation right now, even though his legs don't work," says Jason. "He still does use them for a few things, and he knows they're there."

Kristi says she's talked to Jaya about the decision. One such conversation was captured on video:

Kristi: So what do you think if the doctors make your legs shorter?
Jaya: And cut them off.
Kristi: Do you think that's a good idea?
Jaya: Yeah.

But Jason points out, "With Jaya, you can ask him the same question three different times and get three different answers." Another video illustrates his point:

Jaya: Will it hurt when they make my new legs?
Kristi: It will hurt.
Jaya: I want these legs.
Kirsti: You want those ones?
Jaya: Yeah.

"Jaya's legs are like carrying around dead weight," says Kristi. "Jaya doesn't have any sensation in his feet, so he can't tell if he's injured himself. Jaya will rub his feet on the concrete because he doesn't feel that when it's happening, so he'll just keep going and not even realize that he's opened sores on his feet. He just rubs the meat right off of them sometimes. Jaya can't walk. He walks on his hands. When Jaya flips over and he needs to sit, his legs are tangled at the ankle."

"I think having his legs amputated now would take away his ability to stand the best that he can on his own," says Jason. "It's not a case of if we don't do it now then we're not going to be able to."

Kristi thinks Jason is in denial about his son's medical condition. "He does not understand how much care and stress there is into it," she says. "He told me that my life is no more stressful than any other mom with three kids. It's hard for me to value Jason's opinion about it, because he doesn't do any research about the surgery."

"If you buy him the wrong bicycle, you just go down and buy the right bicycle, but this isn't really something that you get to take back," Jason says. "I'm really concerned that he's going to freak out and [say], 'Where are my legs? Put them back on!' You know, that would be pretty much the worst thing you could hear from you kid."

"My greatest fear about Jaya having the surgery is that when he gets older he might resent me for making this decision for him," Kristi says. Nevertheless, she adds, "I have made up my mind that I do want Jaya to have the surgery."

Dr. Phil asks Jason for his main argument against the amputation.

"I don't say don't do it ever," Jason clarifies. "I think now's probably a little young. It's going to be hard for him to understand. Like we saw, he gave two different answers. A 5- or 6-year-old, I think, is going to be able to understand a lot better than a 3-year-old."

Dr. Phil addresses Dr. Ordon. "As a surgeon, are there complications that could happen now that he would be less vulnerable to later, or does it matter?" he asks.

"Well, absolutely," says Dr. Ordon. "Any elective surgery on a child this age, there's potential for a number of problems but " we've talked this over, the three of us, pretty extensively, and we're all in agreement for a number of reasons that probably waiting would be better. They may come up with new things in terms of tendon transfers, other things that may lend more stability to the legs themselves, and as we know, we're doing stuff with stem cells. There's no rush to jump into this now."

"Dr. Sears, you've dealt with this kind of thing before," says Dr. Phil, "and prosthetics are not trouble free."

"Oh no, there's a lot of problems with them," he says, "and taking Jaya's feet and his legs from him " you can't bring them back. That's irreversible. And when I was watching that tape, he uses his legs from time to time and they're a part of him. And to take those away until he's really, really ready to understand " I don't know if that's the best idea at all. And like Dr. Ordon said, you never know what sort of medical advances are coming down the road."

Dr. Stork tells the couple, "There's no right or wrong answer. This is so difficult, and one of the things that frustrates the two of you so much is that there is no expert on caudal regression syndrome because it's so unusual. And I think at this point, if both of you are not in agreement, we decided as a group of doctors that waiting was probably the right answer, not that there is necessarily a right answer."

"Clearly there's not, but is there anything you're hearing here that influences your thinking?" Dr. Phil asks the couple.

"I have talked to many families who have made this choice," says Kristi, "and they just seem to adapt a lot easier when they're younger. For the few people who have it, it's quite normal to do it at the younger age."

Dr. Sears chimes in, "Kristi, Kristi, kids are very adaptable, and they're just as adaptable at age 5 and 6 as they are at age 3, and I read through all your information. I know you want this, you want this now, but I really don't think you're ready, because your whole family isn't ready. Even the doctors you've talked to, you even said you're not that comfortable with the surgeon, and he's only done this once. You need time to find the best guy out there to do this for Jaya, and that's going to take time."

 

Dr. Phil invites Jaya out to join his parents and meet The Doctors. Dr. Phil tells Kristi, "Dr. Sears, who I think is undisputedly America's leading pediatrician, I think the fact that he's saying that his professional sense and intuition is that the family isn't ready, that this is a very adaptive child who's going to adapt whenever you do whatever you're going to do. I hope you all will think about it, pray about it, and we'll all join you in that process."