Strollerderby : organ donation

Girl Gets Kidney from Mom AND Dad

JeanneSager — Sun, 26 Apr 2009 14:29:00 GMT

She was the world's youngest-ever recipient of a donor kidney when she was just seventeen months old. Now she's on number three - but she's keeping it all in the family.

Kidney number two came from Mom. Now Keeley Beytell-Heron is slated to receive another kidney - this time from her father.

Beytell-Heron was twelve days old when she went on kidney dialysis, the youngest ever child to be put on the machines. She was born of what was a normal pregnancy, carried to term. But within a few days, she was diagnosed with transposed arteries, a condition in just one in ten thousand kids in which two major arteries leaving the heart are connected to the wrong ventricles or lower chambers of the heart. She had emergency heart surgery at ten days old, but post-op complications damaged her kidneys irreparably, prompting doctors to order dialysis, essentially ordering a machine to stand in as functioning kidneys.

Because donor organs for babies and small children are hard to come by, her first came from a man in his thirties. It was a tough fit that doctors made work until she was twelve. Which is when her mother stepped in with a live kidney donation. Now Beytell-Heron is twenty and needs another, and her dad is stepping in.

Kidney donation from within families is relatively common - the need for a genetic match plays significantly into that fact, but kidneys are one of the few things a live donor can offer up, prompting family members to step in to help one another. Donations from both parents, however, are rare - there have been just twelve in the United Kingdom where this family lives.

Let's face it - there aren't many people who can find a perfect match in both Mom and Dad. Although this family is doing a fantastic job of being there for each other, Keeley's story - three transplants needed overall - just reminds parents why they need to get out there and sign to be an organ donor. Inspired to do so? Here's how.

Image: Telegraph

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Baby Survives Removal from Life Support

JeanneSager — Fri, 10 Apr 2009 15:29:00 GMT

A baby girl whose parents were prepared to take off life support so her heart could be donated came off life support . . . and is holding her own.

Baby Kaylee, two months, was born with a rare brain malformation that doctors expected would keep her from every breathing without medical assistance. Her devastated parents made the decision to take her off life support when they learned there was another sick child who could use her heart via transplant.

As far as they knew, there was no hope for their daughter. When doctors removed her breathing assistance, however, Kaylee started breathing on her own. Not perfectly - she's stopped as much as thirty times in one night - but the fact that she's done it at all means doctors have removed her from their transplant list.

If it all sounds too good to be true, it is. Because on the other side is the second baby girl, a one-month-old named Lillian, who Kaylee's parents say will still get the heart if their daughter succumbs in the near future.

Jason Wallace, father to Kaylee, has spent the past day lashing out at people saying that he wants his daughter to die, people who criticized the choice he and wife Crystal Vitelli made to remove their daughter from life support. He says they didn't want their daughter to suffer, and they were being told there was no hope for her to live without medical help.

Now that she's surviving, the parents are cautiously optimistic - they say they want their daughter to live . . . if she can. But they feel too for Lillian's family, a family that had gained hope when they thought their daughter was going to receive a heart. As Wallace says, his family has waded into an "ethical minefield."

Comments on the media reports have run the gamut - from the "you want your baby to die" nuts to the "yay, Kaylee, keep fighting" cheerleaders. But with every piece of this story unforeseen, I'm having a hard time seeing my way to judge any decision this family has made. Their daughter has an incurable brain tumor, one her parents admit she's unlikely to overcome. Losing a baby is hard enough, but to know you could have saved another by choosing to donate her heart, some of that pain could be assuaged.

Now she's surviving . . . and people are criticizing the family, how? Because they didn't know their daughter might have a remarkable reaction to removal from life support? All around this story broke my heart, and as much as it's my job to comment on other people's situations, this is one where I just have to sit back and wonder how anyone can. What do you think Babble readers?

Image: CBCNews

Parents Say Hospital Took Son's Organs Without Consent

JeanneSager — Fri, 06 Mar 2009 13:18:00 GMT

A set of distraught parents say their son should have survived surgery after a snowboarding accident, but he was suffocated by healthcare workers so they could take his organs.

Pretty heady charges, especially for a hospital - you know, the people who take an oath to "first do no harm."

Although there isn't enough information out there to tell whether the hospital is actually guilty of suffocating Gregory Jacobs, the debate over whether the hospital had rights to move in and take his organs is the one parents need to focus on. Jacobs' parents say the hospital moved in to take his organs without their consent. The hospital won't comment on pending litigation.

Should we as parents have the final say?

Parents are understandably devastated after the death of a child - and often in no positition to debate whether they want to turn their child's body over to a doctor with a knife. But after death, time is of the essence. Most organs must be harvested and used within six to seventy-two hours of death. Organs are needed from kids - for kids - because they're the right size for another child's body (think about it, you can't put a 50-year-old man's heart in the body of a sixteen-month-old - the chest is just too darn small), but a significant amount of kids still die because the pediatric population of organ donors is limited.

Our kids are our kids. I can't imagine ANYTHING as bad as losing them, but if it's already happened, I'd like to think I'd have the bigger picture in mind. If I lost my child, I could still save someone else from that same pain.

Mom on Experimental Kidney Donation: Not as Bad as Childbirth

JeanneSager — Thu, 05 Feb 2009 13:33:00 GMT

Doctors attempts to make kidney donation less painful for a mother of three apparently worked.

Having her kidney removed via her vagina, Kim Johnson says, was less painful than childbirth.

The forty-eight-year-old was the first woman to ever have her organ removed in this manner, a procedure performed by doctors at Johns Hopkins University in Maryland this week.

Johnson went in for the procedure so she could donate her kidney to her niece, twenty-three-year-old Jennifer Gilbert who received a kidney twelve years ago from her father. Gilbert's body began rejecting her father's kidney, prompting a need for another transplant.

Besides the necessary tissue match between the relatives, Johnson was a prime candidate for the experimental procedure because she'd undergone a hysterectomy since the birth of her three children. But doctors say they should be able to do the procedure on women without compromising their chances to give birth later, and the success of Johnson's surgery should encourage more women to become kidney donors.

Organ donation by live donors is dropping (despite all the attempts by donor organizations), but patients in the United States waiting for a kidney passed the one hundred thousand mark for the first time ever last fall. On the other hand, the overall number of transplants has increased more than eleven percent since 2003, while deaths on the transplant wait list have decreased each year since 2004. And now states are weighing in on the process, many kicking in tax credits for live donors.

Another big plus for busy moms? Recovery time for this surgery was significantly less than the traditional laproscopic removal of a kidney. Johnson should be out and about at her normal routine within the next week and a half.

Not that I'm planning a big kidney birthing anytime soon, but, hey, you never know.

Image/Source: MSNBC

Mom Gives Kidney to Son's Little League Coach

JeanneSager — Mon, 29 Dec 2008 17:28:00 GMT

Some coaches inspire kids to do big things. But it isn't one of his Little Leaguers clinching post-season play for Pat Neal The kids' baseball coach will get a kidney next month from the mother of one of his athletes.

Neal has been coaching Sam Martin's son Chase for the past four years. Two years ago, when there was a chance Chase would end up with another coach, the Martins crossed their fingers and signed up anyway. Chase was overjoyed - and Neal says it was a "God thing," something that kept the Martins connected to him for these past two years, something that ensured his perfect match would find out he needed a kidney.

Martin is perfect in every way - although there is no relation between the two, doctors say she's been able to keep Neal from waiting as much as five years on a transplant list because they can go ahead with the surgery in January. She said once doctors told her the surgery would not endanger her chances to have another baby, nothing could stop her from helping Neal.

Considering how often parents seem to be coming to blows on the sidelines of kids games these days, it's nice to know there are still coaches out there who parents can really behind. And some parents could put a body part into!

Image/Source: MSNBC

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Blogging Moms Find a Kidney For Teen on Dialysis

JeanneSager — Thu, 27 Nov 2008 17:02:00 GMT

If you've ever doubted the power of the Internet, just imagine the motivation of helping a kid in need thrown in. This is one of those happy holiday stories to make up for all the bad stuff we ended up writing about here on the 'Derby, but I warn you. Get out the tissues.

"Domestic Diva" mom blogger Lisa posted in early November that she could barely keep posting as she watched her teen daughter, Marielle, suffer through her kidneys shutting down. The family was making a drastic move. They were pulling Marielle out of a Philadelphia hospital and heading to New York's Columbia Presbyterian in hopes that the living kidney donor program there could save her life.

Two weeks to the day later, yesterday, Lisa was back online. Blogging mothers across the country had picked up her story and blogged about it, tweeted it on Twitter and shared it on Facebook. Calls poured into Columbia Presbyterian from every state in the U.S., from Africa, from Saudi Arabia. Marielle now has a donor. A friend her mom met through Ebay called the hospital, went through the process and has come up as a match. The teenager is home, still on dialysis, but home for the holiday as doctors work to bring her body to a state of health that will enable them to proceed with surgery.

Yesterday, the day before Thanksgiving, the family released this announcement to the world:

"Thank you to EVERYONE who sent in donor forms, called, blogged, twittered and help spread the word…BUT WE DO NOT NEED ANY ADDITIONAL DONORS AT THIS TIME. I am amazed by the power of the web and the hearts of those who helped make a difference."

Now wipe your tears and get back to that turkey.

Image: Domestic Diva

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Father Can't See His Little Boy, But Can He Give Him His Organs?

JeanneSager — Mon, 03 Nov 2008 15:01:00 GMT

Imagine just finding out there's a little boy out there with your genetic make-up. Yes, he's your son. Oh, and he needs an organ transplant. One of yours would probably do the trick. But, sorry, you can't meet your son.

The plot of a day-time soap? No, this is the story of British dad Michael Shergold, who learned just recently that an ex-girlfriend hid her pregnancy and the subsequent birth of their child. A school caretaker, Shergold was divorced in 1996 after his first wife was unfaithful. He secured full custody of their three children, and raised them single-handedly. His first relationship after his divorce didn't last long, Shergold told London's The Daily Mail, because he discovered the woman had a drinking problem. They broke up, and Shergold moved on. In 2002, he even remarried, this time to Alex, a Pentecostal pastor who moved from Los Angeles to Britain the same year the couple were married.

Then, in January 2007, the Shergolds received a letter from Hampshire social services. Michael called the number listed. Their news? That ex-girlfriend had delivered a son four years prior. It was a shock to Shergold, who said he never even knew she was pregnant. After speaking with his wife, Michael agreed to a DNA test and immediately began planning to incorporate the child into their lives.

But the big shock was yet to come. The boy, the social worker told him, is in ill health, and his best bet for survival is an organ transplant. The best donor, doctors say, would be a close relative. Which is where Shergold comes in. The boy's mother had agreed to donate the organ, then changed her mind. She'd already given the child up to the foster system, and she said the transplant might affect her future chance at having a child. Shergold was the boy's only hope.

He said not only would he like to donate his organ, but he'd like to adopt his own child and get him out of the foster care system. The response? Sorry, no adoption. You can't even see him. But about that organ . . . The fight isn't over yet, and Shergold is still trying to make his decision. He's dealing with what some would call a parent's worst nightmare - knowing that his child is suffering - but he has been denied a chance to reach out and wrap that child in his arms and provide the comfort every parent most wants to give.

How would you choose? Although the organ wasn't specified because of legal issues (social services tried to keep the Daily Mail from publishing the story), the best I can approximate is giving a kidney to a long-lost relative you've never met. We don't usually do that - live organ donation is something we usually do for someone we actually know. But can you really say a child you never met is a stranger?

Image: Daily Mail (Michael and Alex Shergold and two of his children)

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Redefining Death to Preserve Life

Shannon LC Cate — Mon, 06 Oct 2008 12:00:00 GMT

When a family faces the tragedy of a dying baby, the last thing they need is to be asked what definition of death they'd prefer be used to determine when that baby no longer needs its vital organs. But according to The Washington Post, that's just what a recent essay in the New England Journal of Medicine suggests be the new protocol for organ harvesting. At the Children's Hospital in Denver, doctors have harvested the hearts of babies declared dead of heart failure after 75 seconds, only to transplant them and restart them in the bodies of other babies.

The problem is that in this age of high-end medical technology a definition of death--which has been shifting for several years now--is now almost impossible to agree upon, especially when it comes to decisions about when organ donation is appropriate. Ethicist, Robert Truog believes that rather than change the definition of death, we should allow those making decisions for these babies (and other patients) the right to decide at what point it is okay to take the patient's life by harvesting organs. Call it organ retrieval from a living person, but a person with "devastating neurologic injury."
Okay, but now who decides what's "devastating?"

As in all decisions about the end of life and people with disabilities, it is critical to make sure that "devastating" doesn't fluctuate with the ability of a patient or her family to pay for medical treatments or long-term care. And given the fear and loathing so many typically-abled people in our culture have towards disability, it seems possible that "devastating" might depend on one's level of education about disability issues or experience with disabled people (in this case, especially with severely mentally disabled people).

I'll admit it. This would not have seemed like a big deal to me until I became good friends with a blind-deaf mother of twins who has educated me extensively about disability issues. Now, shifting definitions of death and devastation worry me. Too many people assume that having less than a 100% able body is a burden to others or is a "life not worth living." Once you are tuned to listen for it, you hear these ideas tossed all over our culture. I know brain "death" is something much more serious than Down Syndrome, but I still worry about these ever-shifting lines in the sand and wonder how we can make decisions about ending and saving life when we, as a culture, are so ill-educated about what it means to be human.

And now a paradoxical caveat: If you aren't already, consider becoming an organ donor. I am one, and would make the choice for my loved ones to be as well, if I came to my own line in the sand. Organ donation has saved the lives of some of my friends and waiting too long for organs has taken the lives of others. These are difficult issues. All we can do is keep muddling through. Have you ever had to make this kind of call? How did you make the decisions?

Image: Stanford School of Medicine

When 15 Minutes Of Fame Isn't Enough

Amy S.F. Lutz — Tue, 08 Jul 2008 13:32:00 GMT

Are you one of those people who crave the limelight, who imagine themselves the center of attention, who would love to bask in the glow of millions of flashbulbs while admirers from all over the world murmur to one another in incredulity and admiration?

Then have I got a gig for you. Admittedly, it's posthumous. But that hasn't stopped about 8,600 people around the globe from signing up.

That's right, I'm talking about Body Worlds, the controversial exhibit that shows real human bodies, skinned and posed, their fluids and fat replaced by plastic in a complicated process that generally takes about a year. Donors are apparently passionate in their beliefs that "having their bodies dissected, preserved and displayed will serve a greater purpose than burial or cremation."

I don't know - I can't help thinking that donating your organs and possibly saving lives serves an even greater purpose. Donating your body to a medical school to help train the next generation of doctors also strikes me as more noble in purpose - although decidedly less glamorous.

Teen Organ Donor Passes On Cancer-Ridden Organs

Amy S.F. Lutz — Wed, 02 Apr 2008 17:30:00 GMT

This is one of the saddest stories I ever heard.

Fifteen-year-old New Yorker Alex Koehne died suddenly last year of what doctors initially suspected was meningitis. His parents, knowing how strongly Alex believed in organ donation, donated his liver to a 52-year-old man and his pancreas to a 36-year-old woman. His kidneys went to two men, one 46 and the other in his sixties.

One month later, an autopsy revealed that Alex had actually died of a very rare and fast-moving lymphoma cancer. The alert went out, but the cancer had already killed the liver and pancreas recipients. The kidneys were removed, and the patients who received them are currently undergoing chemotherapy.

They say the worst thing in the world is to lose a child, and until today, I believed it. Now I think this might be worse. My heart goes out to this family, who only wanted to do the right thing and honor their son's generous spirit.

Girl Asks To Donate Extra Kidneys

Amy S.F. Lutz — Mon, 18 Feb 2008 13:06:00 GMT

As a parent, I'm not sure which is cooler: finding out you gave birth to a super-specimen with four kidneys, or finding out that you raised a super-specimen who wants to donate her extra kidneys to sick kids who need transplants.

Actually, I know which is cooler. An 18-year-old willing to undergo major surgery, as British teen Laura Moon is - while getting nothing in return besides the knowledge that she helped save someone's life - is definitely something to be proud of. She didn't even try to broker one of the kidneys for a Wii or an iPhone, like most of the 18-year-olds I know would have done.

Laura isn't the only person in the world to be born with four kidneys, although the condition is extremely rare. Doctors discovered the extra kidneys during an ultrasound following a car accident.

Laura is currently being tested to determine whether all her kidneys are viable. If so, British law would allow her to donate at least one, although she would not be able to - as she had hoped - earmark the organ for a three-year-old boy she had heard about who is desperately waiting for one.

Strollerderby : organ donation

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