I had just finished stowing the Christmas decorations in the attic, where one corner was filled with baby things we had used with our first child, Gabriele. Five years ago, we had lost our second child when I was 39 weeks pregnant. It was, I decided, time to let go. I was turning 40 in November.
Later that day I spoke with my husband, Vince. We decided that come summer we would have a large garage sale. The baby things would be sold. Then, about a month later, I discovered our dream of another child was going to come true. I was pregnant.
I found an obstetrician at the Cleveland Clinic and had several tests. Everything looked good. My O.B. decided he would plan a C-section for November 8, my birthday. I would turn 40 and have a child.
On October 23, during a faculty meeting for the Catholic school where I taught, the labor pains began. My husband and I rushed to the Cleveland Clinic. False alarm. The next day my doctor ran an amniocentesis and ultrasound. I seemed to be carrying a lot of amniotic fluid. Everything else seemed okay. He was going to test the fluid for lung development. If all looked fine, he would induce labor just to be safe. When we arrived home, a message on our machine asked us to come in the next day so labor could be induced. I thought, “Thirty-six weeks is just about full term. We’ll be okay.”
The next day at the hospital I was hooked up to every machine known to mankind. The induction began. This was the day Maggie was going to be born — the contractions were coming closer together. All of a sudden, alarms went off. The baby was in distress. Doctors and nurses came running. I was going to have a c-section now. As I was bent over to get the epidural needles in my back I felt that the baby was coming. I yelled out. As soon as the anesthesiologist was done, I was flipped over. Sure enough, I delivered Maggie in three pushes.
Something was wrong. She wasn’t breathing. I cried out, “Save her, please God, save her.” I saw her for a brief moment, then she was whisked away. The staff told me she had been placed on a ventilator but was breathing a little on her own. I got to see her in the temporary neonatal intensive care unit (NICU). My mother was with us, and we baptized little Maggie with holy water. The doctors wanted to transfer Maggie to Metro Health NICU, which had full services to run some testing and would I sign a stack of papers to send her? I signed. And off Maggie went in a life-support ambulance.
All that night we called Metro Health Center for updates. In the morning when my O.B. arrived, I was hysterical. I told him I needed out. He said he needed to continue monitoring me. I had lost a lot of blood during delivery, and my blood pressure was high. We worked out a compromise. He would let me out for two-hour visits to Metro.
A touch
As I entered the Metro NICU, the size of the unit shocked me. There were so many babies. We were escorted to Maggie; I was shocked again. There was my sweet little girl with wires and tubes practically covering her entire body. I was able to touch her little hand and cheek.
We eventually left, but before evening Metro called and asked us to return. Once we arrived, the doctor explained that Maggie had a blood-clotting disorder, and a clot on her kidney had traveled to her brain. She had had a stroke. The left side of her brain was severely damaged.
The doctor recommended that she be sent to Rainbow Babies and Children Hospital, where one of the top neonatal hematologists would help determine the best course of action for the blood-clotting disorder. I signed another stack of papers, and off she went. Luckily, Cleveland has three major medical centers within a short distance of each other.
We went back to the Cleveland Clinic but called Rainbow frequently. By the next morning I had decided that I needed to be with Maggie. I told my doctor that I would be at a hospital if anything went wrong. He signed me out that afternoon.
We soon were at Rainbow with Maggie. Going into an NICU is scary. Before you can enter you must scrub and gown up. As you walk by many isolettes you see so many little babies all wired up. Monitors are everywhere.
The army of doctors that was attending to Maggie was led by Dr. Jill Baley, a neonataologist. That evening we sat at a conference table with the doctors all around. The conference is more than I ever care to remember. Dr. Baley said Maggie had so many issues. First was the blood-clotting disorder and the fear another could develop and cause further damage. Then there were her neurological issues. The left side of her brain was basically destroyed. She could go into seizures and suffer more damage. And there was the fact that she was still breathing on a ventilator. Things did not look good for Maggie.
I can remember letting out a scream, putting my head on the table and crying hysterically. The doctors said they would address her blood-clotting disorder and give her medication for seizures. Beyond that, all we could do was wait and see what might happen. I asked if I could hold her, even for just a few moments. It took more than 45 minutes to transfer Maggie from her isolette to my arms, and I got to hold her for a short time.
The vigil
Two days rolled by as we kept vigil at Maggie’s bed. Family was let in to visit. Even Gabriele came for a visit. We tried to help her understand that her sister was very sick and that we needed to put her care into God’s hands. We prayed constantly and called everyone we knew to pray for Maggie. All of our family and friends were calling everyone they knew to pray for Maggie. Mom even called the seminary at Notre Dame and asked for prayers.
That Monday, the principal from our school called in to see how Maggie was doing and assure me of the children’s prayers. Out of the corner of my eye I saw Maggie twitching and writhing on her bed. The nurse was there trying to help her, alarms were sounding. I told Sister Gloria that something was wrong with Maggie and I had to go. Maggie was having a seizure.
That evening we were in the conference room again. The news was not good. The seizure had severely damaged the right side of her brain and part of the stem. There was nothing to be done. The medical team recommended that we remove Maggie from life support and let her be at peace. The amount of damage was too extensive for her to live.
We asked the doctors for some time to make our decision. I called a priest friend of mine and asked about the church’s stance on life support. I carefully explained Maggie’s condition. He told me it would be all right to disconnect her from life support. We called the hospital chapel for a priest to come and formally baptize Maggie. As my family stood around her, we cried. The priest cried, too.
We informed the doctors of our decision but asked for one more day. We wanted to go home and spend some time with Gabriele to prepare her and to make arrangements. We were to unhook Maggie November 1.
It was Halloween. I went to church and at the Pieta I asked Mary to help me hold my child as she died as Mary had bravely held her child. I asked for the courage to face what was coming. That evening I took Gabriele trick-or-treating. We wanted her to have one little bit of normalcy before the tragedy. I was almost comatose as I walked around. At home, we told Gabriele that Maggie was still very ill and might not make it, but that we were a family filled with love, and we would always hold her in our hearts.
Neither Vince nor I could sleep that night. We knew what awaited us. The next morning we sent Gabriele off to school. My husband and I were stone silent on the ride into Cleveland.
My family was already waiting at the hospital. Maggie had been unhooked from everything except the breathing tube. It was the first time I saw her without wires everywhere. They had her dressed in a sweet little white outfit. She looked like a perfect angel. It was hard to believe that she had sustained so much brain damage. It was breaking my heart.
We talked with my family and asked that we be given a few moments alone with Maggie after they were to unhook her. My mother gave me a crucifix from her friend Theresa. It had belonged to Theresa’s son. Brother Anthony was a young seminarian who had attended the school where I taught. Two weeks earlier, at age 31, he had died of a heart attack. Theresa had hoped his crucifix would help us through our pain. It was a message to hang on to God.
Vince and I moved to a private room. The doctor came in and handed me Maggie, who had been unhooked from her breathing tube. I held her. My husband and I cried. I kissed her. I tried to hum her a little song, “On Eagle’s Wings,” and we waited. We could hear little shallow breaths from her. I placed the crucifix upon her chest and prayed. The doctor explained that it was not uncommon that she would breathe a short time and just stop.
After about 15 minutes my family came in. We all took turns holding and kissing her. We kept the crucifix upon her. Minutes turned into hours. The doctor and nurses explained that sometimes this does happen. We were afraid to move. At some point we noticed that Maggie was holding the crucifix. We left it there. Time dragged on; I was starting to get weak. This was much more than I could handle.
The decision
By evening the doctor came to discuss options for the night. We could stay at the hospital or we could take Maggie home and use hospice care. She said that sometimes a child might live through the night or another day. I left the room so my husband and I could think about it separately. When I came back, we agreed we would take Maggie home. The doctor said she would make the arrangements for hospice to meet us at home. It sounded stupid, but I asked, “How are we going to feed her?” Maybe it was because I couldn’t bear the thought of her starving to death. The doctor said a nurse would be in to show me how to insert a nasal gastric tube. I learned to insert the tube and attach the feedings. I never in my life thought that I could do something like that.
As the doctor gave us final instructions, she said if anything happened in the car to turn around and come back. What was I thinking? But resolve was within me. We were going to go home and be together.
The ride home was harrowing. I held Maggie on my lap and just listened to her breathe. We made it. The hospice nurse arrived and helped us set up and gave us instructions as to what we were to do if the inevitable happened. We had to sign a do-not-resuscitate (DNR) order.
Mom called, we told her to bring Gabriele home. I knew I was going to have to explain something very difficult to an 8-year-old. They arrived, and I told Gabriele that Maggie was very ill and that there was nothing more the doctors could do for her. I explained that we chose to be a family for as long as God would allow us. We all snuggled on the couch and held each other. Vince and I had decided that we would keep Maggie downstairs and that he would take care of Gabriele upstairs for the night.
We made it through that night and the next and the next. I was virtually going 24/7 for days. This was not supposed to be happening. By the time one feeding had dripped in it was 90 minutes to the next. Maggie’s body temperature fluctuated all over the place. We kept a heating pad on hand and kept the house at 74 degrees. I called Rainbow several times and they said that sometimes a child will live on for a short time. Daily the hospice nurses came to check in on Maggie. A week went by and Maggie was still with us. I constantly listened to her breathe. I kept my alarm clock set for every two hours to maintain her feedings just in case I would doze off. We kept the crucifix with her, and it seemed that she always had her hand around it.
My birthday arrived. I was 40. I told God that the only thing I would ever want for my birthday would be for Maggie to make it. I asked for some sign that there was hope. She was strong. She was hanging in there.
Two days later my answer arrived. Just before my husband went upstairs to bed he said, “I wish she would open her eyes or something.” At her 3 a.m. feeding Maggie opened one eye and looked at me. At first I thought sleep deprivation had taken a toll on me. Then I yelled out. My husband came running down the stairs to see me holding her and yelling, “Her eye is opened, her eye is opened.” Gabriele came running too. The three of us stood staring at this child, talking and cooing to her.
Each day something new would occur. After about two weeks I told my husband I wanted the DNR revoked. If Maggie was going to fight, we were going to give her every chance. He agreed. However if we revoked the DNR we would lose the hospice care. I was willing to go ahead, so was he.
Little by little Maggie improved. One day, I went up to shower, and I heard a baby cry. It was Maggie; it was music to my ears.
By Christmas Maggie was off of the feeding tube and drinking from a bottle. When Maggie turned 1 we had a huge party. We celebrate each day as a precious gift from God. The people at my school and parish were wonderful. Meals arrived, gifts, prayer cards, Mass cards, words of encouragement. The children of the school even held a quilt raffle to help us with medical expenses.
While Maggie has many difficulties and developmental delays, we rejoice in all of her accomplishments. She receives therapy four times a week and is seen by a slew of doctors. Maggie is truly a gift from God. We don’t know if Maggie will ever walk or talk or read, but she has exceeded all expectations and continues to do so. She is a joy, and she has taught me the meaning of the words: In God’s time.
Desiree Reo teaches third grade at Assumption of the Blessed Virgin Mary in Geneva, Ohio. Two-year-old Maggie is progressing well, says her mother. “She has the Notre Dame spirit. She just doesn’t give up.”