March 13th, 2014 by admin
In 2010, Ali Pulley and her husband, Mitchell, learned the baby they were expecting had severe chromosomal defects. They were suddenly faced with urgent and wrenching decisions. In preparing for their baby’s birth, they were also preparing—spiritually and physically—for their baby’s death. But in the months awaiting baby Allegra’s arrival and in the 29 days of her short life, Ali says, loving and caring for Allegra was a sacred experience.
Can you tell us the story of your daughter Allegra?
In September 2010, after taking a pregnancy test in a Target bathroom, I learned I was pregnant with our fifth child. Already overwhelmed with the needs of young children, Mitch and I had to consciously choose to be excited about this baby so we would not resent it for the entire pregnancy. We knew from experience we would adore this baby the minute we met it.
Because I was 37 at the time, I was scheduled to meet with a genetic counselor just prior to the mid-pregnancy ultrasound. I smugly canceled this appointment twenty-four hours before, thinking this pregnancy would be normal and this baby would be healthy, just like the others.
I brought Levi (6) and Klein (2) to the ultrasound, thinking it would be fun for them to see the baby. Mitch, unsure of his schedule that morning, walked in just as we were being led back to our room.
As we walked back, I remember asking Steve, the sonographer, “Will you please check the heart? I’m worried about it because my midwife had a hard time finding the baby’s heartbeat at my last visit.” At ultrasounds for my other pregnancies, the sonographer was usually chatty as the baby’s organs and body parts were pointed out. This time the chattiness lasted for only a few minutes before Steve became oddly quiet. Each time I asked about the baby’s heart, Steve explained he hadn’t been able to get a good look yet.
Finally, after thirty minutes, Steve said, “Your baby has some abnormalities that are concerning. There is fluid on the brain, cysts on the spine, and a growth on the heart that’s pushed the heart aside, preventing it from developing completely. Also, the baby’s hands are curled with her pointer finger bent. These abnormalities are characteristic of a fatal condition called Trisomy 18. These babies usually don’t survive until birth, and if they survive birth they don’t live long.” He then asked if we wanted to know the baby’s gender. Yes. A girl. I knew this baby was a girl as soon as the pregnancy test showed a positive.
After stepping out for a few minutes, Steve walked back in with the doctor, a Maternal Fetal Medicine Specialist. The doctor explained the condition as a triplicate of the 18th chromosome and said the condition was “incompatible with life.” We chose to confirm the diagnosis with an amniocentesis and reschedule our appointment with the genetic counselor.
The genetic counselor told us 90% of babies with Trisomy 18 don’t survive pregnancy. Of the 10% that make it to birth, 90% die within the first month and the rest usually die within the first year. Our options were to terminate the pregnancy or to “treat every day as a gift.” If we chose to terminate the pregnancy, we needed to do it immediately to meet North Carolina’s legal time limit.
Levi and Klein were with us as we listened to the sonographer, the doctor, and the genetic counselor. All were careful not to use the words “death” or “dying,” instead using “fatal” and “terminal” to describe Trisomy 18. Somehow, though, Levi understood. That afternoon the boys played on the floor of their room as I sat nearby thinking through our morning. Levi came over to me to say, “Mom, I don’t want our baby to die,” then gave me a long hug. Since Levi understood, we explained to all of our kids that our baby was sick and wouldn’t be able to be with our family for long.
Mitch and I spent the weekend wrestling with the options. Initially, we hoped things would quickly terminate naturally to avoid making difficult decisions. We spent hours pondering the Church’s position on abortion since we potentially fit in one of its “exception” categories. Ultimately, we decided terminating the pregnancy would forever haunt us with “what if’s” and wouldn’t save us from grief. Confident in this first decision, we cautiously moved forward unable to predict this pregnancy’s end.
Tell us about Allegra’s name.
Although we always have a short list of names, we don’t usually name our baby, or even know the gender, until we meet him or her. In this circumstance, though, we wanted to know the gender and name the baby immediately in an effort to help us recognize her as a family member. We named her Allegra Sprouse Pulley. Allegra is an Italian word that means quick and happy, which was perfect for this little girl whose life we knew wouldn’t be long.
What are some of your memories of the pregnancy?
Because every single cell in Allegra’s body had fatal flaws, we chose to provide hospice care if she survived birth. As a result, most of the second half of the pregnancy was spent planning for her death. I met with specialists to discuss Allegra’s condition, the ethics of not doing everything possible to save Allegra’s life, and her care. I researched hospice agencies. I interviewed labor and delivery nurses, explaining I wanted someone tough and kind who wasn’t a crier. I wrote an extensive birth plan. I visited cemeteries. I priced out funeral homes. I planned the funeral while friends planned the food for afterwards.
My kids approached the issue of Allegra’s fatal handicap differently and were more concerned about her than her death. The appeals in their prayers were tender and honest. Mitch and I heard overheard requests for Allegra to meet Jesus, for her body to not hurt her, for her to remember us and for her to have fun in heaven. Our home had a calming peace about it even as my grief surfaced daily.
Knowing Allegra would die allowed me to mourn in small ways every day, instead of being overcome. I waited to get out of bed in the morning until I felt her move inside me, reassured she was still with me. I prayed for her to be born alive even though statistics weren’t on our side. The triggers were different, but I felt sadness every day and tried to limit my tears to sunglasses, showers, or the pool as I swam laps.
Why were you hiding the tears?
I always thought of myself as someone who was tough and in control, so I didn’t want people to know how difficult it was for me to process the emotions and the uncertainty. I also didn’t want my kids to see me crying all time, consumed by sadness.
Even with that sadness just beneath my skin, I was still able to function—which in hindsight was truly a tender mercy. My sense of humor was intact and I could get tasks checked off my “to-do” lists. I could still enjoy my kids, help them with homework, and take them to activities. They needed to know they were loved and not forgotten as we planned for and mourned their unborn sibling. On nights I was too sad to figure out dinner, we’d pick up Happy Meals and head to a park. The kids were thrilled with that! Although they knew the baby inside me would die, and they expressed concerns and disappointment, it didn’t affect their happiness. They could separate themselves from it and enjoy the day’s adventures.
You started a blog, “Awaiting Allegra,” during your pregnancy. Why did you decide to do that?
People responded differently when they found out what was happening. Some would drill me with questions, some admitted they didn’t understand, and some said nothing to avoid any awkwardness. The blog was a way for me to talk about what was happening on my own terms. Admittedly, every time I hit “publish,” I felt a little bit exposed.
Amazingly though, the more I wrote, the more I found the posts to be helping people. Friends emailed, saying, “I haven’t had a bad day since I started reading your blog,” or “I read an extra bedtime story to my kids last night because of your blog.” Some felt they were getting an inside look at a very sacred experience. An OB from NYU said after reading the blog she would never treat her patients in similar situations the same way again. Other women pregnant with babies with Trisomy 18 contacted me, looking for advice or just needing to feel a sisterhood with someone in similar circumstances. Through the blog and its resultant comments and emails, we felt an outpouring of love and support that buoyed us. I think it would have been there anyway, but we may not have witnessed it as we did.
What were other ways you felt supported by community?
In the past, I’ve always compartmentalized my life: church friends, neighbors, parents of my kids’ friends, teachers, gym friends. This was one instance where everyone in my life felt connected.
Members of our ward did incredible things. We had meals consistently. Friends checked in regularly. Supportive notes were received. Sweet prayers were offered. Thoughtful gifts were given to keep our kids busy. The ward truly figured out how to mourn with us and how to comfort us.
Wonderful neighbors supported us in similar ways. Some days the ward would have a meal scheduled, but a neighbor would also stop by with food. I knew if I needed time off, there were always a couple of neighbors I could call. One neighbor, whose kids were older, came by weekly to take Klein with her as she ran errands. Once, while Allegra was alive, Levi really wanted to compete in a neighborhood swim meet. Since neither Mitch nor I could attend, I dropped Levi off at the pool and told him to go inside and find Mr. and Mrs. Baker, knowing they would watch out for him.
Church members, neighbors, teachers, and even strangers were so kind to us, often in spontaneous ways. I feel the experience deepened our bond as members of a community reaching out to one another and reminded me to look outside of church for great friends.
Since most Trisomy 18 babies don’t survive the pregnancy, going into labor must have been a milestone. Did you expect to make it that far?
A few months before Allegra was born, Mitch said in a blessing Allegra would be born alive. I dismissed this, thinking he was merely saying what I wanted to hear. A few days later I had a dream in which I was holding a baby with dark hair and full pink lips. I knew it was Allegra, but when I woke up I dismissed this revelation, thinking I was merely remembering a baby with similar features I’d seen at church the day before. Several times, Heavenly Father tried to communicate with me, but I wouldn’t listen.
So when the time came to have Allegra, I put my hopes aside and trusted statistics instead. Holding a living baby with Trisomy 18 would be a long shot. We checked into the hospital on a Thursday night thinking I would be induced in the morning, instead, we realized I was in labor at two a.m. Because the drops in Allegra’s heart rate were significant and caused us stress we chose to not be hooked up to heart rate monitors. Even if her heart rate dropped dangerously low, we’d already been informed an emergency c-section was not an option.
When she came out, the midwife immediately put her on my stomach. She was purple. We couldn’t figure out if she was moving, much less breathing. She was gurgly for a little bit, but as we watched, we could see her chest rise and fall and knew she was breathing.
Allegra was born alive, but we had no idea if she was going to last a few minutes, a few hours, or a few days. We called my parents right away to get the kids and bring them to the hospital where they met her within the hour.
Allegra weighed only four pounds and had multiple external deformities including a club foot, a missing ear, curled hands, and facial features that matched those of other babies with Trisomy 18. She didn’t look like a normal baby. But when my kids walked in, there was this beautiful acceptance of their baby sister. They adored her! They were excited she was alive and would join us at home.
Within an hour of her being born, Mitch and my dad gave her a name and blessing. In that blessing, Mitch acknowledged that Allegra’s life would be short and then asked that she “touch the veil occasionally to let us know you are doing okay.”
While you chose to carry the pregnancy to term, you and Mitch decided not to medically intervene after Allegra was born. What was the process you went through to make that decision and what kind of care did you decide to give her?
Honestly, I don’t completely understand why we sometimes try everything possible to prevent people from dying, particularly when we know life continues after death.
With Allegra, the choices were to keep her in the hospital tethered to equipment or provide hospice care as we loved her in our own home. Staying in the hospital might have prolonged her life, but ultimately, it couldn’t save her life.
The hardest part of choosing hospice was wondering if people were judging me. This didn’t sway my decision-making, but I did find myself thinking, “Do people think we are awful for not doing everything possible to save the life of our baby?”
Hospice care was the right decision. We were home six hours after she was born. Hospice nurses and a social worker showed us how to take care of her and regularly checked in on us. We literally loved our baby to death in our home. Loving and caring for Allegra was a sacred experience.
What was it like having Allegra in your home?
One of us was always holding her. Sometimes we laid her down when she slept, but still kept her bassinet nearby. At the end of every day her hair was sticky from all the kisses she received. Each time Klein walked by, he wanted me to put her head down so he could kiss it again.
As a result of the Trisomy 18, Allegra suffered from apnea which caused her to stop breathing, stiffen, and slowly turn purple. Watching her suffer through this was excruciating because not only did it look uncomfortable, we were also never sure if she’d recover. The apnea episodes got longer and more frequent as the days passed.
I wasn’t sure how we’d react when we had Allegra, so before the birth we asked that visits be limited. As soon as we had Allegra, though, I wanted people to know her! The Monday after she was born we invited everyone over for an amazing “Quick and Happy Hour.” Our street was full of cars and our house was full of people. Allegra was held by everyone that walked in. Watching all this happen was so sweet. My midwife had wisely advised me not to breastfeed this baby, so my chest was completely bound up in ACE bandages and I was uncomfortable and tired, but still so excited to share this little baby. There was such a special spirit in our house and on our street. Everyone rallied around us to celebrate her life.
My kids had a blast introducing her to everyone. They stood by the front door trying to charge people admission and climbed in the trees like little monkeys. When their friends walked up they would say, “Do you want to see our baby?” then push through to the front row. It was such a sweet way for them to share.
Our daughter, Cairo, who was in third grade, had been tight-lipped about everything until then. She didn’t know how to process everything. But on the night of the open house, you can see in the blog comments that Cairo has an ongoing commentary with some of the visitors that evening. She had never wanted to talk about the experience previously. But that night she found her voice.
Sweet Baby Allegra was with us for 29 days. The last week of her life she had to spend a lot of time on oxygen, her skin coloring had gone grey, and she’d eaten very little. After postponing a business trip for as long as possible, Mitch flew to California for a few days then came back on a redeye flight Friday morning.
Friday afternoon I went to Mitch and asked that he give her blessing. Mitch prayed that, if she was suffering, she wouldn’t have to last much longer in her body.
Our hospice nurse, Noxie, came over soon after and showed me how to bundle her for warmth and keep her comfortable with medicine. Before Noxie left I asked her my usual question, “Do you think this is it? Do you think she is dying?”
She said, “I don’t know, Ali. I don’t know.”
Exhausted from his flight, Mitch helped Allegra and me get settled then went to bed. I tried to lay down with her that night, but she was too uncomfortable to sleep. We sat on the couch for most of the night, dozing off once or twice for just a few minutes. I put her on the oxygen machine, attempted to feed her, changed her diaper, cleared her congestion, and gave her medicine, but she wasn’t getting better. I didn’t recognize the signs that her body was shutting down.
At about three a.m. I got on my knees to pray with Allegra on my lap. My prayer was, “Heavenly Father, I don’t know if I can do this anymore. I’m exhausted physically and emotionally. I’m worried about caring for four busy kids and one with special needs. I don’t know what’s going to happen. I’m scared. She’s uncomfortable. Please, just let her go.”
After a couple more hours I took Allegra outside to sit on my front porch and watch the sun rise. She was so still and so quiet—no longer struggling. When we walked back inside she took a breath that was unlike any other and I immediately recognized it as her last.
I ran upstairs to wake Mitch and tell him Allegra was gone. We listened to her take a few final reflexive exhalations, then sat by the side of the bed and cried.
Our kids were young; they were usually up before six, asking for food, asking for chocolate milk, asking for us to turn on the TV. But that morning they got up, went into the playroom, turned on the TV and shut the door without even coming in to talk to us. So Mitch and I were able to sit by ourselves and process what happened. We went into the bathroom and I bathed her in my sink one last time. I put lotion on her body, changed her clothes and wrapped her up in a blanket. Then we called the kids in to explain she had died.
The kids gathered on the bed around her. Cairo cried. Cameron and Klein sat with tears in their eyes. Levi rubbed his special blanket on his cheek then sweetly offered to give it to Allegra. They stayed with us for a few minutes and then, amazingly, went back into the playroom to watch Star Wars while Noxie came to verify the time of death and the funeral home carried the body out. The sweet loving peace that filled our home while we had Allegra lasted for months after she died.
How did having Allegra and caring for her change you spiritually?
Fortunately, faith in our Heavenly Father’s plan has always come easy for me. I don’t believe without questions, but I do believe without much effort. Through this experience though, we were forced to make so many decisions regarding continuing the pregnancy, choosing hospice instead of life-sustaining care, the birth plan, methods of burial, and how to talk to our kids about life and death that I wanted to be comfortable with our approach. To avoid regret, I daily sought guidance as I read and pondered scriptures, church handbooks, and conference talks. I sought the opinions of doctors regarding the ethics of our decisions, as well as those of trusted friends and family. I learned how to have a prayer in my heart as my requests for comfort and confirmation were continual. Spiritually, this was not just a period of accepting and believing, but a time of actively searching, pondering, and praying to know if our will was aligned with that of Heavenly Father.
As the pregnancy progressed, I also learned about gathering strength. I temporarily eliminated people and activities that weren’t necessary. This purge wasn’t purposeful, it just happened as I focused on my family and their needs no longer feeling the need to know everyone or volunteer for everything. I didn’t feel guilty if I couldn’t nurture a friendship or feed the missionaries. Thankfully, our world shrunk, time slowed, and life was happier despite the terrible anticipation of loss. I think this simplification of our life was a tender mercy from a loving Heavenly Father.
I believe Allegra survived for those few weeks because, despite her discomfort, she wanted to experience the warmth and touch of love in a physical body. I think she wanted to feel arms around her, lay on her dad’s chest, sleep beside her mom, feel siblings cuddling her, and be kissed on her cheeks and head. I could usually stop Allegra’s crying by picking her up or touching my forehead to hers. Touch and proximity were a comfort to her. After death, I don’t know if spirits can feel love in a physical sense.
Spiritually speaking, I now feel my age, no longer a kid looking out of the eyes of an adult. I am assured our Heavenly Father knows our needs and meets them in ways we are unable to predict. In our most difficult times, He will prompt people to help us and He will provide small mercies or maybe even a miracle. I believe prayer (your own and those of others) can lift and sustain as it eases pain. I believe although one’s faith may come easily, life’s experiences are necessary to test and refine and deepen our testimonies.
A few months after Allegra passed, I talked about our experience with a friend who said, “Oh, trials are so hard.” I thought about this then heard myself say, “I don’t know if I’d classify losing Allegra as a trial.” Because, despite the loss, having her was a sweet and sacred time for my family and we feel blessed for the experience of knowing and caring for her.
In his closing prayer at Allegra’s funeral, Levi spontaneously asked, “that Allegra will have fun in heaven with Jesus and wait for us there.”
At A Glance
Alison Sprouse Pulley
Location: Raleigh, North Carolina
Marital status: Married
Children: Cairo (12), Levi (9), Cameron (7), and Klein (5)
Occupation: Stay-at-home mom
Schools Attended: Brigham Young University (advertising undergrad and JD/MPA)
Languages Spoken at Home: English
Favorite Hymn: “I Know My Father Lives”
On The Web: Awaiting Allegra
Interview by Annette Pimentel. Photos used with permission.
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