You’ve probably seen pleas to get that “Y” – now a heart symbol — on your Iowa driver’s license identifying you as a registered organ and tissue donor.
You’ve probably also viewed the tearful yet joyous videos of donor family members embracing a grateful transplant recipient for the first time to listen to the still beating heart of a loved one they have lost.
You may even recognize that Iowa Donor Network (IDN), headquartered in North Liberty, has a big role in this as the state’s only organization authorized to recover organs and tissue from deceased donors for transplant purposes.
But exactly how this government-sanctioned non-profit accomplishes its life-saving mission day after day remains a mystery to many.
“It’s a very complicated and delicate process,” said Heather Butterfield, an IDN spokesperson who works in IDN’s North Liberty office.
“But the people who work here are dedicated to the mission,” she added. “They know how important it is.”
Butterfield explained how the organization’s staff mobilizes in a typical transplant situation.
It starts when a hospital contacts IDN about the possibility of an organ donor because a patient is on a ventilator but not going to survive.
In cases such as this, there is a potential to recover as many as eight organs for transplantation – two lungs, two kidneys, plus the heart, liver, pancreas and intestines.
“We send a highly-trained staff member to talk to the family about the possibility of organ donation,” she said. “If the person has registered as a donor, the family usually wants to comply with their wishes.”
Butterfield said many families claim knowing their loved one is able to save lives after they are gone ends up being “the one bright spot” during a time of tragedy.
Once permission is secured and paperwork completed, information is sent to UNOS, the United Network for Organ Sharing which manages the nation’s transplant system under contract with the federal government.
UNOS will attempt to find organ matches among the some 114,000 persons in the U.S. on its transplant waiting lists, about 600 of whom are Iowans. Deciding who gets an organ depends on a multitude of complex factors, including geographic location, since, for example, a heart or lung must be transplanted within six hours.
A second IDN employee — often a former intensive care nurse — is then called to the hospital to oversee the recovery of the organs in terms of securing medical teams and organizing schedules.
A transplant surgeon and his or her team will then arrive to recover the organ, then escort it to the receiving patient and perform that operation, often at another location. By then another IDN team has arrived to assist with room setup, organ packaging and delivery and any other duties necessary.
Butterfield points out that the donor is treated with the respect of a hero throughout the entire process.
Immediately after death and before the surgical team begins recovery, a statement from the family about their loved one is read aloud, followed by a moment of silence. A beautiful hand-made quilt from a group of Iowa City volunteers is placed over the donor’s body, then later presented as a memorial gift to the family.
If the donor family requests it, IDN staff will make hand prints of the deceased which the family can take home from the hospital. A new offering by IDN to donor families is a “heart print pillow”, again hand-made by volunteers, which plays an actual recording of their donor’s heartbeat when pressed.
IDN staff will also coordinate, on request, an “honor walk” where hospital staff line the hallways in silence as a donor is transported.
“Our care of the family does not end at the hospital,” said Butterfield. The IDN sponsors a multitude of gatherings, fundraisers, candlelight tributes and many other events each year which bring donor families together. Many develop close relationships with staff members and other donor families and become dedicated volunteers for the organization.
Donor families also can receive information, if both parties agree, regarding how the organs or tissue of their family members were used.
Butterfield can speak to this through personal experience. Her sister died of a brain aneurysm at age 20 and became a tissue donor.
This is a separate process from organ donation and results in the recovery of skin, bone, veins, heart valves and corneas. Tissue can be recovered during a longer length of time after death and can be frozen for later use.
“We got a follow-up letter from IDN with details such as age, gender and location of those who received tissue from my sister,” she said. “More than 300 people were helped across the U.S. and beyond over a two-year period, thanks to her. We were so grateful to learn that.”
Between here and a second office in Altoona, 90 full-time and another 40 part-time staff members are employed by Iowa Donor Network. Some employees work from other locations around the state to be able to respond quickly as donors become available.
Changes in health care reimbursement brought challenges to the organization in 2017, but as it now approaches a 25-year milestone, IDN is celebrating some important records broken in 2018:
Iowa had the highest number of registered organ donors in the state’s history last year – 1.8 million – which at 73 percent of adults is far above the national average of 54 percent.
In addition, a record total of 74 deceased donors resulted in 248 organs transplanted, the most in the state’s history for a single year. The year prior, there were 54 donors and 165 organs transplanted. In 2018, an additional 863 deceased persons were tissue donors.
CEO Suzanne Conrad, who donated a kidney to a member of the IDN board a few years ago, expressed gratitude for the record year.
“We are so thankful for the generosity of the donors and their families,” she said, “and the incredibly dedicated healthcare providers who help carry out these wishes.”