This story actually began 30 years ago, on April 17 1976. I had a stillborn twin that I named Jason. That long ago, they didn’t take pictures, or even let me see him. They came in and told me I had a stillborn son and they had “disposed” of the body. When I cried for him, everyone, including my father, said, be “Be happy that you have one live baby.” His sister Jessica was taken to the NICU, and it was touch and go for 3 months.
At age 20 Jessica became pregnant. The pregnancy was going along fine when her water broke at 32 weeks on April 16, the day before her birthday. At that time she lived about an hour away. She was rushed to the hospital by ambulance. When she arrived we were waiting for her. So I was able to be with her when Madeline was born. She was a beautiful baby but only weighed 3 lb. 4 oz. Because of her size she was placed on a ventilator. Everything was fine for 24 hours. Jessica called me and said “something is wrong with Maddie”. I went straight to the hospital. As they were turning down the ventilator, Maddie wouldn’t breathe. She was also very “floppy”. She had no muscle tone.
Jessica and her husband decided to have her baptized right away. She was baptized on Jessica’s birthday. The doctors decided they needed to move her to a hospital with more equipment. She was moved to the hospital where I was working as a Respiratory Therapist. After many tests, we still didn’t know what was wrong with Maddie.
Jessica spent every day at the hospital. Finally, after seven weeks, they told us her brain was no longer working. My precious child had to make the heart wrenching decision to take her little baby off the ventilator. We were going to do it at 10:00 that night. We left the hospital long enough to make burial arrangements.
My husband, Jessica, her husband Billy and I returned to the hospital. They took Maddie off the ventilator, and to our surprise she didn’t die right away. She would turn very blue, quit breathing and we would all cry thinking this is it. She would then take a deep breath, like a gasp, and start breathing again. At midnight my husband left to take care of our other children.
At three in the morning, I left Jessi and Billy alone with Maddie for a while. At first I was so angry with God. I didn’t understand His plan. My daughter and her husband made this very difficult decision to take her off the ventilator. Why didn’t she die? Why did my daughter have to suffer more? As a mother, you want to take care of your children. You would do anything for them. To have to take away her breathing tube to let her die was beyond difficult. As a grandmother and grandfather, my husband and I were doubly sad. Our baby was hurting, and our granddaughter was dying and there was nothing anybody could do.
Morning came and Maddie was still alive. I asked the nurse if we could please take her home. They said yes! I called my husband and he got the crib ready. Jessi and Billy were so excited to bring her car seat to the hospital, because they never thought they would use it. Even though they knew she was going home to die, they were excited. When we got home, my husband had her crib ready. It had her name above it and stuffed animals in it.
Jessica and Billy got to feed her. They got to hold her without any tubes. My younger kids were 12, 6 and 5. They got to hold her as well. When she had a spell when she turned blue, we had them leave the room. Maddie was in a room with music, a rocking chair, and her crib with antique dolls on the shelves. It was a very peaceful death at 7:00 that night. I finally understood God’s plan. Jessica was able to acquire in that night and day a lifetime of memories. She got to hold her daughter, rock her, feed her, bathe her, walk with her, all without tubes. At one point, Jessi was holding her and looking into Maddie’s face, and Maddie smiled at her. That was a true miracle, because Maddie did not have the muscle tone to smile. After she died, we got to hold her for a couple of hours. Since they didn’t know exactly what disease she had, Jessica had to let them do an autopsy. She had to know exactly what was wrong with Maddie for her future children’s sake. My husband didn’t want the funeral home to take her back to the hospital for the autopsy alone. He asked if he could carry her. They let him carry her in their car. At the hospital, they put him in a room and let him change her into a little hospital gown. Jessica wanted to save the outfit she died in. She saved everything Maddie ever wore. Jessi was too sad to go out and buy something for her to be buried in. I had to do it for her. I cried the whole time I was in the store. She looked like a beautiful Angel in her coffin.
I went back to work at the hospital (University of Nebraska Medical Center). A nurse asked me to speak on a bereavement panel to new healthcare workers about what are the right things and the wrong thing to say to people who experience a death in the family. It was through this panel that I decided to start the Mary Madeline Project several years later. I had to quit work because of a bladder disease, asthma and pulmonary hypertension. My husband, Jessica and I didn’t want another family to have to go to a newborn department of a store and have to buy an outfit to bury their baby in. Those departments by nature are full of happiness. Also, if you have a premature baby, you can’t fine something small enough.
Madeline died of a disease called glycogen storage disease. Both parents are carriers and they had a 1 in 4 chance of their children having the disease. Maddie had a rare form of it, and any of their children that had the disease would die. Jessica and Billy have since divorced. Jessica is remarried and they have two boys & two girls. They bring all of us great joy.
Jessica’s ex-husband, has suffered another loss, a baby who died of SIDS. He has since remarried and had more children.
The loss of a baby is like no other. It is not a loss of memories so much as a loss of things to come. The minute you are pregnant, you have the next years planned out. It is so unnatural to bury your baby.
We know we aren’t changing the world, but for those parents on that awful day that their baby dies, maybe we are helping their world for that day. If a baby is stillborn, the outfit is right there at the hospital and the parents can get pictures right away.
Each of the unique outfits and blankets are made with love and concern for the parents who must use them. Maddie only lived 7 weeks, but through the Mary Madeline Project, she has touched many lives. Through the memory tags that are placed in all the little burial outfits, I feel like all the babies and other deceased loved ones are being remembered as well.