February 13, 2007
I chose to announce my pregnancy at 8 weeks to my family while on a ropes course harnessed in and up on a high wire. We were so excited to be expecting again. I had previously miscarried twice, but felt calm about this pregnancy not ending in miscarriage. Because of my previous miscarriages, my midwife scheduled an ultrasound at 10 weeks just to make sure everything was okay. I felt like everything was fine and so decided to go in to this appointment without my husband. I remember watching the screen and my eyes were on that little beating heart. I felt elated that there was a strong healthy beating heart and seemed oblivious to the technician’s reaction to the picture in front of us. She quickly excused herself and went and got a specialist. This is when I clued in that something was wrong. They proceeded to explain to me that our baby had a condition called anencephaly, which is a brain anomaly. It’s a neural tube defect that happens at about 4 weeks gestation when the neural tube doesn’t curl around and close properly. We were told that our baby would continue to grow and develop in utero, but wouldn’t be able to survive very long, if at all, outside of the womb. I was advised to terminate the pregnancy because there was no chance of survival. This was never an option to me. It wasn’t my place to decide when to stop this little one’s beating heart, no matter what the deformity. Telling my husband the news was heart wrenching, and telling our children (ages 7, 5, & 3) was even harder. Thus began our journey.
We decided as a family to celebrate every day we had with this precious baby. Over the next 30 weeks we prepared for the arrival of this little one, while enjoying every flutter, twist, hiccough, and kick. My husband and I drove to different cemeteries in the area, wanting to find a good resting place for our baby before the time came. We counted down the days to find out the gender. On September 7, 2006 we found out that our baby was a girl. Everything was formed perfectly on her. The doctor’s had been concerned about the possibility of a cleft palate, club feet, missing digits, or internal organ problems, as this can sometimes appears in anencephalic babies, but she was perfect from the tip of her toes up to her eyebrows. We decided to send out birth announcements at this time announcing the “upcoming” arrival of our baby and revealing her gender and her name to friends and family. We didn’t want to send out announcements after her birth and have to tell of her death as well. We wanted this to be something happy for people to read and to feel the joy of the journey with us. The announcement read:
Jon and Krista Carroll
are happy to announce the upcoming arrival
of their sweet little angel
Candace Naomi Carroll
with an expected due date of
February 14, 2007
Candace has been diagnosed with anencephaly, which is
an anomaly of the brain. She is growing and developing
normally in utero, but is not expected to live long after
birth. We are celebrating every day of our daughter’s life
and wanted to share our little angel’s journey with you.
We chose Candace for her name because of its meaning. Candace means: flowing white, pure. Her middle name is a Bible name that we love.
Throughout the pregnancy I was working on quilts and two burial dresses. They were two different sizes, but identical. This way she could be buried in one and I could keep the other one as memorabilia. I made other clothes and lots of hats for her as well. I made a quilt to wrap her in, and throughout the pregnancy had any friends and family that wanted to take a turn putting in stitches of love around the hearts on the quilt do so. I also made matching smaller size lap quilts for each of my children, for them to remember Candace by. I bought a small little stuffed bunny for Candace to be buried with, and bought extra for my children and my husband and I to keep.
We received special permission to have our ultrasounds recorded onto a videotape. I had a lot of ultrasounds because they wanted to keep an eye on the amniotic fluid level, which can increase rapidly with this condition and cause problems for me. The technicians were always so sweet and printed lots of pictures off. We even got to use the newer 3D machines and see some great pictures of our baby girl. Our extended family rallied together and we planted commemorative trees in a local park in Candace’s honor. Poems and songs were written. I kept a journal for Candace from the start of my pregnancy, which I continue for her now. I write it in a letter format to my baby girl, as if she would someday read it. I noted every appointment, every kick, every miracle she was a part of (and there were many), every impression that came into my mind and heart. I couldn’t deny the gratitude I felt from my baby for giving her a chance at life, for giving her the opportunity to experience her body, however long or short that might be.
As my due date got closer I made arrangements with a photographer to be at the hospital to catch every moment we had with her. I assigned a friend to the video camera for the same purpose. I had a birth plan given to the hospital staff prior to my due date, so they would know our desires and wishes. I had arranged for another friend, who was a dentist, to come and do her hand and foot molds after she was born.
Usually the mother’s of anencephalic babies will not go into labor on their own, so we had scheduled for me to be induced on Tuesday, February 13, 2007. Finally, her birth date came. We were so excited but sad at the same time. I had a hard time with the decision to induce because I felt I was not only picking her birth date, but her death date. It was a terrible feeling. But I also knew that if we didn’t induce we wouldn’t get the chance to hold her while she was alive and she would eventually die in the womb. The doctors constantly reminded us that there was a very small chance that she would survive birth. They tried to prepare us for her to be stillborn, but we felt calm and peaceful that things would work out. We had our children and family in the waiting room, ready to come in as soon as we sent for them.
Candace Naomi Carroll was born at 6:00 pm. She weighed 5 lbs. 1.5 oz. and was 17 ¼” long. She was beautiful and she was alive! She had survived birth. We were overjoyed. She had a lot more skin and hair on the top of her head than we had anticipated. Actually, the only part of her brain that was outside of the skin was on the very top of her head and it looked like a princess crown sitting right up on top of her head. The area around the exposed tissue on top of her head was very flat and squishy, but she did have skin and lots of dark hair there, which we thought would all be open. The doctor’s had told us that she wouldn’t cry, suck, or open her eyes. They were wrong. She didn’t cry right after birth, but a few times she did let out a little cry. It definitely wasn’t the strong healthy normal cry of a baby, but a cry nonetheless. She nursed a little, but it was exhausting for her. I eventually pumped and she sucked breast milk from a syringe. She did peek open her eyes several times for us and even smiled a few times.
After my husband and I had spent about 5 minutes alone with her, we sent for our other children to come in. It was a magical moment. They were so entranced with her and couldn’t get enough of her. They each had many turns holding her. She would make light puffing sounds when she would breath out and blew a lot of bubbles out of her mouth. The children loved this and it became very endearing to us. She continued to breathe okay and her coloring looked good for the most part, so we invited in our family and close friends. When we saw how well she was doing we let everyone have a brief turn holding her. Eventually, the hour was getting late and our children needed to get some sleep. We said our goodbyes and goodnights, not knowing if she would last through the night.
It was a very long night. It seemed that we lived in 5 minute increments. She would do well and her coloring would be good, then she would turn purple and stop breathing, then she would manage to start breathing again and her coloring would be good again. We had decided ahead of time not to put her on any life support. We didn’t want to prolong the inevitable and have a machine keep her alive if it was her time to go. Throughout the night she had many seizures. These were terrible to watch her endure and we thought we would lose her with each one, but she hung on.
By 7:30 the next morning I called my parents and asked them to bring the children down because we didn’t know how much longer she would be able to hold on. They came and the children continued to hold and love her more. It was Valentine’s Day and being children they were excited about their Valentine’s parties at school and they felt very torn between going to the party or staying with Candace. They chose to go to the party. Candace continued to fight and hang on and we continued to love and cuddle her and soak up every possible minute. The doctors and nurses felt she could continue this up and down pattern for quite some time and we started discussing the possibility of bringing her home. Our 3 year old daughter really wanted to bring her home.
When my older two children returned from their Valentine parties, they were so relieved to see that Candace was still alive. I asked them if they wanted to help me dress Candace in the clothes I made for her and bring her home to our house. They cheered and gathered around her and me on the bed and helped me change her diaper and start to put on her clothes. We sang a song to her while we dressed her. The song we sang was, “I Am A Child of God.” After we finished singing I noticed her coloring wasn’t very good again and called for a nurse. The nurse confirmed that she had stopped breathing again, but this time her heart was slowing down and she was fading.
The moment we had been dreading for 30 weeks was here. It was her time to go and we sensed it. We gathered her in our arms, our children were snuggled in around us and we kissed and hugged her goodbye as her heart beat it’s last beat at 5:13 pm. She lived 23 hours and 13 minutes. We knew this moment was inevitable. We felt it was a miracle to have as much time as we did with her. We just sat and held her for a long time. When we were finally ready to go we received clearance from the hospital to take her home to bathe and dress her before taking her body to the funeral home.
I’ll never forget the car ride home, holding my baby in my arms, smelling her sweet soft skin, caressing her cheek, and feeling my tears spill over onto her face. When we arrived home we bathed her and put on the larger of the two burial dresses that I had made. We put on the cute bonnet that I had made to go with the dress. She looked beautiful. We had arranged for our photographers to come to our home and take some pictures of her for us before her body stiffened too much. This is when we had some of our most precious pictures taken.
After the photographers left, our children were put to bed, and my husband and I were alone again, we held our baby and wept. We wanted to continue holding her all night, but knew we were keeping the funeral home open very late. We finally summoned the courage to drive to the funeral home. Leaving my baby at the funeral home was one of the hardest things I had to do. I didn’t want to be separated from her. We drove home and cried ourselves to sleep that night.
The next couple of days were a blur and were spent making arrangements for the funeral. Our family was very helpful in taking care of our other children while we made the final arrangements. My milk came in during this time. I had decided ahead of time to pump and donate my breast milk in hopes that it would benefit a baby somewhere, and also maybe help me balance out my hormones over the next couple of months. This ended up working out fine in the weeks to come, but during this time of planning the funeral, it was more of a nuisance and a painful reminder. I felt numb and disconnected to the world. I wanted Saturday (the day of her funeral) to hurry and come so I could hold my baby again.
Saturday, February 17th did finally come. It was a beautiful sunny day with blue skies (which is rare for Oregon). Our family dressed in pink in honor of Candace. We drove as a family to the funeral home to pick up our baby, then drove to the church. Our friends and family had made a beautiful memorabilia table in the front entryway. Our photographers had made a slideshow from the pictures they had taken of our time with Candace and put it to music I had previously picked out. It was precious.
We greeted our guests who wanted to see our baby Candace. Then our children held her and kissed her goodbye. I thought my heart was breaking in two as I hugged and kissed my baby for the last time and placed her in her tiny casket. Putting the lid on her casket was the hardest thing I have ever done. It was like closing a door to my heart that could never be reopened until I am reunited with my baby again. Her service was beautiful. This little baby touched so many hearts and lives. She was a miracle.
We convened to the cemetery, where my siblings sang, “The Lord Bless You and Keep You.” We had flowers for all in the group to take turns and place on her casket. It made me smile to see the pile of flowers was larger than her little casket. We had 50 white balloons that we released. It was symbolic for us. Letting the balloons go was like letting her spirit return to heaven. Eventually all had said their goodbyes and left. Our oldest daughter (age 7) wanted to stay and watch the burial. Originally my husband and I had decided that we did not want to stay for this part, but because of our daughter’s desire to stay, we decided to stay. It was emotional to watch, but at the same time comforting to see her tucked into mother earth and peacefully laid to rest.
The butterfly has become our symbol for her. Shortly after Candace passed away our children came up with this beautiful butterfly analogy. They explained that when she was in my tummy she was a caterpillar, and when she was born she was in her chrysalis because she couldn't move around very well in her body. Then when she passed away, her spirit was set free and could fly away to heaven, just like a butterfly.
It’s now been 1 year. We celebrated her 1st birthday by writing little notes and putting them in white balloons and releasing them by her grave. We snuggled together in blankets by her graveside and recounted favorite memories with her. Our children enjoyed decorating her resting place for her birthday and also for Valentine’s Day. We returned home to have birthday cake and surprised the children with a gift for each of them, instead of for Candace. Our home and front yard is decorated with little butterflies here and there as precious reminders of her. We have sweet memories of our baby Candace and her journey, and even though we miss her terribly, we know we will see her again. For this we are so grateful. Our family grew so much from this experience. Our relationships are stronger, our desire to be better is stronger, and our faith is stronger.
Even though I never want to go through this again, I don’t regret our experience or wish to change anything that happened. I’m so grateful we continued on with the pregnancy. It makes me shudder to think of all the sweet experiences and memories we would have missed out on. After all, some people only dream of angels, but we held one in our arms.