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  • Ethan’s Gift
  • Michelle Burgess

Ethan was your average boy next door. He loved everything most 8–year–old boys do including playing baseball, swimming, and watching his favorite baseball team, the Philadelphia Phillies.

On December 3rd 2008, life for our family changed forever when Ethan was diagnosed with Diffuse Intrinsic Pontine Glioma, a rare inoperable brainstem tumor. DIPG is in essence a death sentence. There are no survivors and life expectancy after diagnosis is only 9–12 months. Our family was devastated.

For the next 14 months, we lived life to the fullest, never taking a single moment or day for granted. As Ethan’s condition worsened, and it became clear that he was close to passing, I spoke with Ethan’s doctor about my desire to be able to donate Ethan’s corneas and his brain tumor for research. He informed me that because of Ethan’s type of tumor that he may be a candidate for donation of other organs as well if that is something we wanted to do.

Knowing that there was nothing we could do to save Ethan, it was something that we felt we could do to help others so we decided to explore the option of donating Ethan’s other organs. We were put in contact with the Gift of Life.

Two representatives from Gift of Life came to our home and discussed at length with us what would have to happen to make organ donation possible at the time of Ethan’s passing. Specifically that Ethan would have to pass away at the hospital and in the operating room. This was very different than the hospice environment that we had planned. They also had told us that Ethan was only the second young person that they had ever dealt with that the families had planned ahead of time to donate organs. The other person was a teenager who planned his own organ donation.

On January 26th 2010, Ethan’s pain had become unmanageable at home and his breathing had become very labored. I spoke with his oncologist and he advised me to bring Ethan to the hospital to try and get his pain under control.

We loaded Ethan up in the car for the one–hour car ride to the hospital. On the way to the hospital Ethan fell asleep while being cuddled by me in the backseat. When we arrived at the hospital we noticed that his fingers and toes had turned purple. The nurses immediately checked his oxygen and it had fallen to only 10 %.

The doctors advised that he had slipped into a coma in the car, one that he would never awake from. He was immediately placed on life support. A scan was done and it was evident that the progressing tumor was placing pressure on the areas of the brain that controlled basic life functions such as breathing. Ethan could not recover.

The decision was made to begin to look for recipients for Ethan’s organs. Because Ethan had not reached the point of brain death, his donation would have to be a post cardiac death transplant, meaning, life support would be removed, when his heart stopped beating and he passed away, the organ procurement would begin. However, he [End Page E1] would not be able to donate his heart. This was very sad for us, knowing how strong his little heart was, but we did understand the process.

On January 28th 2010, our family spent the day saying goodbye to Ethan. Even though he could not respond, we know that he could hear us. The nurse was wonderful, doing everything possible to accommodate our large family and despite all the tubes and machines, make it so that I could cuddle with my little boy one last time.

Ethan was moved to the operating room and with his stepfather and I on one side and his father and stepmother on the other, life support was removed. Watching my son take his last breath, while I held his hand, kissed his cheeks, told him I loved him and that it was okay to let go and go to Heaven was the hardest moment of...


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