One of the most traumatic life events any individual can face is losing a child – especially an infant. It is a heartbreaking loss that seems senseless and unnatural. Many families find donation can help with the journey of grief and loss, but unfortunately, there are limited donation opportunities for families who lose an infant. Their organs, eyes, and tissues are typically not developed enough to be used for transplant.

However, since 2013, seven eastern Iowa families have found comfort and peace in knowing that the eyes of their child will benefit the Infant Globe Project, a research project being conducted at the UI Institute of Vision Research (IVR) at the University of Iowa. Researchers are seeking to learn the mechanism of how the fovea, the part of the retina that is responsible for our sharpest vision, normally forms and why it fails to develop in some children.

Dr. Rob Mullins, the lead researcher on the project, explains, “We currently know very little about the anatomical and molecular development of the fovea, which develops in the first few months after birth, so the donation of these precious infant eyes is critical to this research.  A better understanding of the fovea is essential for developing treatments for children in whom the fovea doesn’t form properly.”

Before the inception of the Infant Globe Project, eye donation was not an option for infants who died in the state of Iowa. Mullins is grateful this research project has provided grieving families with the opportunity to donate. “In situations where the parents are very motivated to donate and it will help them cope with a terrible situation, we are truly glad to be a part of that,” he says.

Adrianna Morgan became one of these highly motivated parents when her infant daughter Olivia died in May 2016. “Our decision to donate was immediate and I don’t regret it at all. My mother made the same decision for my brother when he died,” says Morgan.

In 2013, Matthew and Mary Rysavy, who were both medical students at the University of Iowa when their son Samuel died at only four days old, also decided to donate to the Infant Globe Project. “Working at the hospital, we encountered so many individuals who had benefited from donation to transplant and research. Even though it was a difficult time for us, we felt that it was a great way to honor Samuel’s life in hopes of benefiting someone else,” says Mary.

Mullins acknowledges the great sacrifice parents like Morgan and the Rsavys have made and how this changes his approach to research: “As researchers, we often work on mice and cultured cells and the science can be pretty impersonal. Working with human tissue has a much different dynamic – many of our adult donors were grateful patients at the Department of Ophthalmology and Visual Sciences, and their families are often interested in helping with our studies,” says Mullins. “While we treat all our samples with the utmost respect and care, I consider the Infant Globe Project donations even more precious, especially knowing someone is undergoing the horrific loss of a child. We take the stewardship of these tissues very seriously, and are careful to maximize their use to ultimately help as many people as possible.”

Adam Stockman, Director of Laboratory Operations at Iowa Lions Eye Bank, has recovered the globes of each of our seven infant donors. The father of three children of his own, Stockman has great empathy for the families of the infants who have donated to the project. “I can only imagine how hard it must be for these families to lose a child. Many of these families were first-time parents; some had been trying for years for their miracle baby, only to lose them.”

Despite the sensitive nature of the Infant Globe Project, Mullins and Stockman continue to persevere because they trust that it will lead to clinical advancements in treatments for visual disabilities.

“I have faith that Dr. Mullins and the other researchers at IVR will find answers through their research, and that’s what keeps me going – knowing something might be learned that can help other children,” says Stockman.

After the first two infant globe donations, Mullins visited with the staff at ILEB to share some of his exciting discoveries. Although these findings are preliminary, Mullins believes they have detected markers in these infant foveas that may lay the groundwork for the development of macular degeneration, the leading cause of vision loss, far later in life.

“If we are able to determine what the blueprints are to develop a fovea at the molecular level, we may be able to use this knowledge to rebuild a fovea that has been destroyed by disease, for example by using stem cells,” says Mullins. “This could impact the future sight of countless individuals.”

Although the lives of our seven infant donors were short-lived, they have the potential to have a lasting impact far beyond what many of us have in a lifetime. We recognize and commemorate the special gifts these families made during one of the most difficult times in their lives, all with the hope of helping others.

Learn more about the Iowa Lions Eye Bank: www.iowalionseyebank.org