A Year of Missing You - Part 1

This week I discuss the events that transpired during Maddie’s final days. In part 2, I will discuss my grief journey over the past year. Part 2 will be posted next Friday.

It doesn’t seem real that our little girl has been gone for a year. The last time we put our little girl to bed was on August 24, 2023. She was rushed by ambulance on the morning of August 25, 2023. We were told in the hospital that she would recover. It wasn’t a matter of if, but when. By happenstance, Helen DeVos was a little slow on the night of August 27, 2023. Maddie’s team of doctors decided to take Maddie down for a Head CT. Shortly after, we heard some whispers in the hallway. They were discussing the need for an MRI but they couldn’t possibly be talking about our daughter.

Maddie was wheeled back into her room. The night resident, who had been with Maddie all weekend long, hung her head. “The results of Maddie’s CT scan are devastating” she said.

My wife almost collapsed to the floor. I held her up as the nurse grabbed a chair. “We will schedule an MRI for tomorrow to confirm the results. If you would like to call any family or friends, we will lift the visiting restrictions for them.” The resident stayed in the room with us for a little while longer. She offered her condolences.

I remember this as almost an out of body experience. This couldn’t be happening to us. This couldn’t be happening to my little girl. I’m her father, I was supposed to protect her. I was supposed to protect my family. Now my little girl was on death’s door and my wife was shattered. I failed.

This is what I said to my sister as I called her during the early hours of August 28, 2023. It was nearly 1 in the morning. I remember trying to hold back my tears as I told my sister that I had failed my daughter.

A priest came by in the early hours that morning to give Maddie the anointing of the sick. We needed a miracle at that point in time. A few family members arrived in those early hours and more were on their way. By 6 am, Nicole and I were ordered to sleep for a few hours.

I was awake after a couple of hours of restless sleep. I needed to make more phone calls. I called Amanda Moore, the CEO of the Angelman Syndrome Foundation. I knew that the announcement of a passing in our small community would make waves. I wanted to prepare her once the MRI results confirmed that Maddie would not make it. To our surprise, she dropped everything and headed from Indianapolis to Grand Rapids, Michigan.

At 3 pm, Maddie was wheeled down to take her final test. By 4 pm, Nicole and I were asked to enter a conference room. We sat down at a long table. Across from us were Maddie’s PICU doctors, as well as a familiar face. Maddie’s neurologist, who wasn’t on call, was at the table. She had tears in her eyes. She had come to this meeting, not because she had to, but because she wanted to be there for us. We were informed that Maddie’s MRI had confirmed what we alreay knew.

At that table, we were asked if we wanted to donate Maddie’s organs. We had just learned that our daughter would pass away, and we had to make another decision. I looked at Nicole, and she looked at me. It was one of those conversations that a couple has. No words were exchanged, but we had a full blown conversation. I turned to the assembled team, and told them that we would like to donate Maddie’s organs.

As the Gift of Life representative sat down, he explained the process. There were two paths to declare death. The first path was to declare Maddie brain dead. In order for this process to play out, two independent physicians needed to run a series of tests. These tests needed to be performed a number of hours apart from one another. The other path, was to remove Maddie’s breathing tube near the operating room, and once she was deceased, they would whisk her away from us in order to harvest her organs.

We decided to try to go down the brain death path. We couldn’t imagine watching our little girl pass away in front of our eyes. In the devastated state we were in, there would be no going back from that. We were also informed, that the Gift of Life process could take upwards of two weeks. We didn’t know if we had the strength to endure another two weeks in the hospital with our baby but we knew this would be the right thing to do.

After signing some paperwork and going through the whole application process of the Gift of Life, we still had to let our family know. The doctors exited the conference room and told us that we could use the room to inform our family. We gathered everyone who had showed up to the hospital, our parents, our siblings, and Amanda. Nicole stood by my side as I told the group the results. There were a lot of tears shed as you can imagine. Our loved ones supported Nicole as I headed out to make multiple phone calls to our extended family and friends.

I took over the small waiting room on Maddie’s floor. I didn’t want my wife to have to relive Maddie’s passing over and over again. I remember fixing my eyes on a certain part of the metal framing around the windows as I told the story over and over again.

Sometime over the next day and a half, our priest, Father Chuck, came to visit. He baptized Nicole into the Catholic Church, he gave Nicole her first communion and confirmation, he married Nicole and I, and he baptized Maddie. He came and confirmed Maddie into the church as well as performed her last rights. He had given Maddie all of her sacraments. He stayed in the hospital with us for over two hours, giving us comfort.

We were informed that Maddie’s first death test was about to be performed. We were asked if a group of students could stand in and watch. It was a bit ironic. Maddie’s hospital room was always full of doctors and students. With having Angelman Syndrome, this was the norm for Maddie’s hospital room. Students and doctors alike would always crowd in, with permission, to learn how to treat a child with Angelman Syndrome. So having a group of students learning how to perform this test was bittersweet. It was like Maddie was giving her second to last lesson.

I decided to stay in the room while the test was being performed. I remember my thoughts were a jumbled mess. I wished so badly that she failed, and that by some miracle she was going to survive. On the other hand, I knew she was tired, I knew it was her time to go home. The first test went as expected, Maddie’s brain did not show signs of life.

We floated through those days. I’m not sure which way was up or which way was down. The days and hours blended together. We were informed that the second brain death test was to occur at 11:45 pm on August 29th. So our nurse decided to make the night special for us.

She organized a group of people to come into the room and let us hold Maddie one last time. Nicole went first. They positioned Nicole in an empty hospital bed. A team of nurses and aids moved Maddie on top of Nicole. I left the room for a bit in order to give Nicole some time alone with our daughter.

When I came back, it was my turn to hold Maddie. I was always the one to read Maddie a book. Even with her diagnosis, I wasn’t going to deny her the experience of having her dad read to her. So when they laid Maddie ontop of me, it was only appropriate that I read her one last story. I broke down more times than I could count, but we made it through that last book.

Finally, it was time for Maddie’s brain death exam. It was extremely hard for me to sit through the first one, so I accompanied my wife and left the room. A little while later, two doctors came out of the room. We were told that this was a particular doctor’s first brain death exam, it was Maddie’s final lesson. Maddie was pronounced dead at 12:18 am on August 30, 2023.

This death notice, started the official process of the Gift of Life.Unbeknownst to us, Gift of Life was working behind the scenes to procure recipients. They did not want us to suffer any longer than we had to at the hospital. Nicole and I pushed an empty hospital bed up beside our daughter. We cuddled her, and each other, and drifted off to sleep.

I was woken up at 5 am. I was beyond tired. A nurse told me that they had identified a recipient from out of state. Maddie would go into the operating room at 8 pm.

That final day, our family streamed into Maddie’s room saying their last goodbyes. We stopped accepting guests at 5 pm so we could spend those final hours with our daughter as a couple. Our family of 3 would soon become separated. Nicole and I would be staying on this earth, and Maddie would be going to heaven.

At 8 pm, a team of doctors and nurses entered Maddie’s room. We began the journey of taking Maddie from her floor to the operating room. The hallway outside of Maddie’s room was lined with doctors and nurses. They formed an honor guard to the elevators. The elevator took us down to the basement, where the operating room was located. As Maddie was wheeled out of the elevator, that hallway was lined with our family and friends. One surgeon remarked that it was the largest honor walk they had ever witnessed. We kissed our daughter goodbye for the final time.

Maddie was never a convenient child. She did things on her own terms. It was only fitting that she passed away right before Labor Day. We immediately had to go to the funeral home to make arrangements. Since Maddie was so small, we had to special order her casket before everyone shut down for Labor Day.

This holiday complicated Maddie’s funeral as well. As you can imagine, after the handful of days at the hospital, Nicole and I wanted Maddie’s funeral to be held as soon as possible. We were asked several times to postpone the funeral to the following weekend. However, we needed closure. We understood the desire to be with us, and we appreciated it. We just needed to put our daughter to rest.

Just about every doctor and therapist that Maddie had, either showed up to her visitation or to her funeral. It spoke to the impact our daughter had. Maddie’s daycare shut down early for her visitation. My workplace shut down for Maddie’s funeral. People drove in from across the country. People flew in from all corners of the country. Our immediate family and extended family dropped what they were doing to be with us. We were engulfed with the love and support that we so desperately needed.

Last year at this time, I was in survival mode. I just needed to put one foot in front of the other. I didn’t know what the next minute held, I just needed to get to it. This year, it’s been all about processing the traumatic events of what transpired. Next week I will take you on my year long journey of grief. I will talk about what I’ve learned. Just like I always have, it’ll include the good, the bad, the ugly.

Please continue to pray for us this week. As you can imagine it has been hard. Thank you all for your support, it truly means so much to Nicole and I.

Written by Adam Birchmeier