I had no clue and wish I'd known sooner, but will be ready next year with a little more research.
Oftentimes, babies born with terminal conditions are able to give life to another through organ donation. As a registered organ donor myself, I loved the idea when it was discovered that my own little man's life would be limited. Although some medical text would deem a child born with hydranencephaly as being "brain dead" at birth, fortunately another determining factor would be used in these cases: donation after circulatory death, also known as donation after cardiac death (DCD).
However, upon further research, I was advised that this was not an option with those diagnosed with hydranencephaly, for whatever reason (oddly enough, yes with anencephaly but not with hydranencephaly??). Out of frustration, I tossed the topic to the back burner and there it has remained for well over 3 years.
Next April, I will be ready for the opportunity in April to bring awareness to this possibility by sharing whether this is a definite option to explore to the families we serve through Global Hydranencephaly Foundation who may be interested.
In the meantime, are you and your loved ones registered to donate life to one or more of the 120,000 individuals who are awaiting organ transplants in the United States alone? If not, why?
Transplant Expert Dispels Organ Donation Misconceptions
By Robert Preidt
Misconceptions prevent many people from agreeing to donate their organs and potentially save a life, according to a transplant expert.
More than 120,000 people are on organ transplant waiting lists in the United States. But a shortage of donated organs means that an average of 18 people die each day while waiting for transplants.
For every person who donates their organs after they die, the lives of up to 50 people could be saved or improved, according to a Mayo Clinic news release.
As part of National Donate Life Month in April, Dr. Brooks Edwards outlines and dispels the myths that get in the way of organ donation. He is a transplant cardiologist and director of the Mayo Clinic's Center for Transplantation and Clinical Regeneration.
Some people mistakenly believe that if they agree to donate their organs, doctors won't work as hard to save their life. The fact is that doctors will do all they can to save your life, Edwards said in a Mayo news release.
Other people believe that organ donation is against their religion. But Edwards said that organ donation is consistent with the beliefs of most major religions, including Roman Catholicism, Islam, most Protestant faiths and most branches of Judaism. If you have doubts or concerns, speak with a member of your clergy, he advised.
There are also those who think that people who've donated organs or tissues can't have an open-casket funeral. Since a person's body is clothed for burial, there are no visible signs of organ or tissue donation, Edwards explained.
Some believe they are too old or sick to donate their organs. But the decision to use your organs is based on medical criteria, not age. Also, only a few health conditions automatically disqualify people from donating organs. Sign up to be an organ donor and let doctors decide after you die whether your organs and tissues can be used for transplantation, Edwards suggested.
Another misconception is that rich and famous people go to the top of the list when they need a donor organ. But they don't receive preferential treatment, and fame and wealth aren't considered when deciding who gets an organ, Edwards said.
SOURCE: Mayo Clinic, news release, April 15, 2014
Learn more by clicking the image above to visit the Donate Life site or the one below to visit the US Department of Health & Human Services organ donor website.