Finding support and hope in the donation process

National Donate Life Month (NDLM) began in 2003 as a means to encourage Americans to register to give the gift of organ, eye and tissue donation. In an ongoing effort to raise awareness and offer support to those going through this emotional journey, Parkview recently introduced a new program.

In early April, we added a Donate Life flag to the pole at Parkview Regional Medical Center Entrance 1. Beginning in May, this flag will be flown only when an active donation is taking place. Eventually, that flag will be given to the family of the loved one who made a better life possible for someone else through their gift. Kimberly Gebauer, RN (BSN), professional services coordinator, Indiana Donor Network, shares more. 

What does the flag signify and how does the process work?

The flag will fly from the time of authorization until completion of the operation. This process can go from 24-36 hours on average, depending on the donor and allocation. The flag will then go to the patient’s legal next of kin. The flag signifies the solemn gift and decision that a donor and/or his or her family has made on what was likely the worst day in their lives. It signifies selflessness. It also signifies hope – hope for the approximately 125,000 Americans that are currently waiting on a list for a donated organ, and hope for the 22 people who die on that list every single day while waiting. To me, seeing the flag flying would mean taking a moment of silence for that family’s loss.

What do we hope to achieve by implementing this service?

If nothing else, flying a Donate Life flag during a donor process raises awareness for donation. But it is also a small thing we can do for our donor families to honor their loved one who means so much to them. The hope is that this would be a comfort.

Why is National Donor Month so important?

It really spotlights the fact that there is great need. People are unfortunately dying every single day while waiting. 

How can people become a donor?

There are three basic ways you can register to become an organ, tissue or eye donor.  The majority of people register through the BMV (you’ll see a heart on the license with the word “DONOR”). You can also go online and register your decision at http://www.donatelifeindiana.org or text the word “DONOR” to 95577.

A story of hope.

We often hear of adults who are impacted by the donation process, but here, Heather Dillion, BSN, RN, clinical nurse lead, shares her journey with her daughter, Elizabeth.

Our sweet little girl, Elizabeth, was born in February 2015. Shortly after we brought her home, we noticed that she wouldn't eat, and anything we did get her to take would come right back up. During our month-long stay in the NICU at Parkview Regional Medical Center, the team of neonatologists and surgeon, Dr. David Smith, discovered that Elizabeth had a severe form of Hirschsprung's Disease (or total aganglionic bowel). This meant her intestines did not have the necessary nerve cells to stimulate peristalsis, so nothing Elizabeth took by mouth could be digested properly. She had a jejunostomy, a G-tube and a central line placed during her stay and, once she was stabilized, we were discharged with total parenteral nutrition {TPN} and minimal tube feeding.

We continued Elizabeth’s care with a GI specialist at Riley Children’s Hospital, Dr. Charles Vanderpool, and her transplant surgeon, Dr. Shane Mangus. They explained that, in her current condition, Elizabeth would struggle to thrive. She would remain dependent on the TPN for nutrition, which would be hard on her liver, and she would always have a central line. After weighing the pros and cons, we decided that a transplant would be the best way to give our daughter a chance at a quality life.

She couldn't be listed right away; she needed to get bigger and stronger. After 10 months, we started all of the pre-transplant testing. Dr. Mangus recommended that Elizabeth be listed for a multivisceral transplant, which includes the small and large intestine, liver, stomach and pancreas. The TPN had caused irreversible liver damage (which was expected), but the silver lining was that people typically do better, long-term, with a multivisceral transplant versus an isolated bowel transplant. Elizabeth was listed in mid-January 2016.

I can tell you, waiting is really hard. We had bags packed and made plans with family, friends and neighbors so we would have someone to take care of our 4-year-old son at a moment’s notice. On March 5, Elizabeth was admitted for a fever and what turned out to be a central line infection. After several days of treating with antibiotics unsuccessfully, it was decided that the current central line would need to be removed and a new line placed after any remaining infection was clear.

The saying, "It's always darkest before the dawn" never rang truer to us. We were frustrated and tired. Tired of our little girl not feeling well, and always being hooked up to an IV pump, and not being able to enjoy something as simple as eating. On March 8, Elizabeth had the central line removed and, as we were getting ready to go to sleep that evening, we got the call. Dr. Mangus. The team was aware of Elizabeth's current condition, but the match was just too good to pass up and the donor was at Riley. We agreed to accept and Elizabeth was taken to the OR at midnight.

According to Dr. Mangus and the rest of the transplant team, Elizabeth has done incredibly well. We were discharged on April 1, a week early. She is still getting assistance from a nasojejunum tube since she won't consistently drink from a bottle, but she loves to eat. This is a girl who wouldn't touch her birthday cake, but now can absolutely devour a chocolate chip cookie. She has so much more energy and everybody that sees her comments on how much happier she seems; that she has a sparkle in her eyes now.

It is not lost on us that none of Elizabeth's good health and happiness would be possible without a brave parent making a choice to donate their child's organs. We will forever be indebted to these parents that were able to see through their despair and grief to make a decision that literally saved Elizabeth's life. I hope my daughter’s story will help everyone become more aware of the importance of, not just the importance of organ donation, but of pediatric organ donation in particular.

If you would like to read more about Elizabeth's journey and follow her progress, Children Organ Transplant Association (COTA) has a page for her at http://COTAforElizabethD. The website is also a way to donate to help families going through the process. As a 501(c)3 not-for-profit organization, 100 percent of the donations COTA receives in honor of a transplant recipient go toward offsetting transplant-related expenses.

Thank you to everyone who has supported us during this journey. Without all of your love, support and prayers, Elizabeth would not be doing as well as she is today.

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