Declan’s Story

by Band Back Together | Jun 19, 2014 | Baby Loss, Congenital Heart Defects, Coping With Baby Loss, Down Syndrome, Grief, Help For Grief And Grieving, Pregnancy After A Loss (Rainbow Baby), Sibling Loss | 0 comments

The creation of human life is one of the most complex and shockingly beautiful things that our bodies are designed to do. The microanatomy that goes into this task is so astonishingly complicated that it’s a miracle any of us walk around at all. And yet, most of us do. Most…but not all.

When a baby dies, we are fragmented. Shattered, we must pick up the pieces and put them back together as we pay tribute to our children, our tables forever missing one, our families incomplete, our treasures in heaven, our babies alive only in our hearts.

It is through our stories that they live forever. These children were here and they mattered. They were loved. They are loved.

There are many, many difficult things about a stillbirth. First and foremost, a child is lost. Every pregnancy revolves around planning. You plan your due date, your delivery method, your parenting style, and your hopes for your baby’s future. The second that heart stops beating, you lose it all. What makes a stillbirth loss distinctive is that your baby never takes a breath. There’s no birth certificate and no death certificate. There’s no legal proof your baby ever existed. You pay for the delivery but you get no tax deduction. The world moves on as if your baby never was. For the person who carried the child, it was very real. Your dreams and hopes were real, the baby’s movement was real, your baby was real. The majority of the rest of the world, however, would just as soon forget it ever happened.

The simplest question becomes complicated. How many children do you have? I feel guilty if I don’t mention my son, but I know the other person really doesn’t want to hear about my deceased child. They were just asking what they thought was a innocent question.

Declan’s Story

When I woke up that morning, I didn’t know that I had already heard my son’s heartbeat for the last time. It was just a typical day. We got everyone up and dressed for work and daycare. I was working for half a day since my maternity leave began at 12. I gave myself a day and a half before our scheduled C-Section to get just a little rest before all the fun began. I was nervous, excited, and scared for the child within me to be introduced to the world.

We had found out at the 20 week anatomy scan that our son had a heart defect and a 50/50 probability of Down Syndrome. James and I had celebrated the discovery that we were finally having a boy and then suddenly we were mourning his health and prognosis. We cried, sought spiritual guidance, commiserated over the unfairness of the world, hoped for the best, and planned for the worst. Many, many ultrasounds and visits to a pediatric heart specialist were endured to try to figure out when we were going to have to tackle the heart surgery. We were hopefully expecting for him to be stable upon delivery and make it to 6 months before surgery was needed.

In due time, we came to accept our son, however he would be presented to us. We loved him, and while we were very excited to meet him, we were extraordinarily apprehensive, as well. We named him Declan Raiden and anxiously awaited his arrival.

I finished up loose ends at work and went to a last lunch with all my co-workers. After ordering our food, I realized I hadn’t felt the baby move in a while. I had been at the doctor the day before for my last non-stress test to monitor the heart rate. It wasn’t reacting enough and the nurse brought me a Mt. Dew and monitored me for another 20 minutes. After that, the doctor read the scan and stated that the heart was reacting appropriately and we confirmed my C-Section date for two days later. I wasn’t too concerned the next day at lunch. I poked him a few times and joked about him being lazy and running out of room. I ordered a Mt. Dew, poked him a few more times and waited for him to kick me. I mentioned to the others that I couldn’t remember feeling him move all morning. My co-worker, Lisa, called her mother who is an OB nurse and they suggested I go to the doctor’s office and have them check the baby, just for peace of mind.

I texted James and told him I was going by the doctor to see if they would do a quick doppler so I could check the heartbeat since I hadn’t felt him move. When I walked up to the counter at the OB’s office, I actually felt a little silly. After a quick explanation of why  I was there, the receptionist spoke with the doctor who agreed to the doppler. The hallway seemed very long as we approached the room. I sat down and lifted my shirt. The baby had still not moved and my heart was in my throat, beating so hard I thought it was going to be hard to hear the baby’s heart beating over my own. The cold ultrasound juice was squeezed onto my enormously pregnant belly and the tech pulled out the wand.

I knew. After about 3 seconds, I knew. Anyone who has had a doppler that late into a pregnancy knows you hear the heartbeat almost instantly. I heard silence. The tech started moving the wand around in a futile search. “Oh God,” I moaned, “No, no, no, God please no.” She searched for a while longer as I put my fists over my eyes and groaned. The tech said, “Maybe he’s lying on his side and I just can’t find it.” But even she knew she was lying. You could see the shock in her face as she stood quietly and told me she was going to get the doctor.

The mind is a terrible thing and hope dies slowly and painfully. I waited. No one had officially told me anything and even though I knew, hope was lingering. Someone came into the room and told me to go next door to the ultrasound room. I moved like a zombie and clambered my way to the next chair I could collapse into. I raised my shirt once again and looked at the TV screen as the doctor prepared the machine. I was terrified.

The image of my son showed up immediately. He was so still. And, again, I knew. The tears began to fall even before the doctor could finish saying, “I’m so sorry, Paula, there’s no heartbeat.” I buried my face in my hands and felt the full crushing blow of what she had said. She asked if I wanted them to call my husband and I nodded. One of the nurses left to find his number in my file. The doctor put her hand on my shoulder in an ineffectual attempt to comfort me. Then, at a loss for anything to say, she left me to my mourning.

I turned over onto my side, wrapped my arms around my heavy, lifeless belly, and sobbed. There’s no use in trying to explain what I was thinking or feeling. It’s a jumble of useless emotion. My son is dead. My body somehow failed him. What did I do wrong? Was there a multi-vitamin I missed? Did I overdo it at the pumpkin patch with the girls? Why? When? How? I was lost in a fog of confusion and grief.

After an indefinable amount of time, James was escorted in the room and the door shut behind him. I sat up and looked at him. Thinking that the doctor had already told him, I expected to see a mirror image of my own despair, but I saw only confusion. “What is it? What’s wrong?” I realized that they hadn’t told him and, for a moment, I didn’t know how to say it. How do you tell your husband his little boy is gone?

“There’s no heartbeat.”

“What? What do you mean?”

“There’s no heartbeat. He’s gone.”

He glanced up at the screen where the last image of our son remained, and I could see the realization flow over his face. He turned to me and put his arms around me. We stayed like that for a long time, grieving together.

The doctor returned to the room to make a plan. I’ve always been a meticulous planner. This very baby was planned because I wanted him to be born on 11/11/11. I planned my schooling, my volleyball career, my marriage, my home, my job. I just never thought I’d ever have to make a plan on how to deliver my deceased baby. We were told to go to the hospital and meet with the doctor on call. As I was gathering my things, James stepped out and called my parents. He explained what happened and told them to come. They live 3 hours away. James went to work to close up his office and I drove myself home.

After James picked up our 3 and 5 year olds, his parents met us at home to watch them and we went to the hospital. We had to go to registration and start the process of explaining our situation over and over. Signing my admission paperwork, I saw the words ‘fetal demise’ for the first time.So there’s a term for this, I thought. Great.

We waited for over an hour in a delivery room. We waited in a room in which hundreds of babies had been born to parents crying tears of joy. We cried as well. We sat together on the couch and said very little. When the doctor finally arrived, he explained that it was too late to do the C-Section that day. He wanted to do it the following day when a team would be prepared. I was shocked. I didn’t realize it would be an option to wait. We were sent home.

My parents were at the house when we got there. We hugged and cried and told them what the plan was. We didn’t talk much. No one wanted to alarm the girls. So, my mom made dinner and we ate in silence. James and I went to bed early. We laid in bed facing each other, with our dead son between us. Only 24 hours earlier, we had been watching him move and James had put his hands on my stomach and talked to Declan. He had been a very active baby and I loved feeling him move. All his energy made me feel like things were going to be ok. Now, my huge belly, the symbol of a glowing pregnancy, was a harsh reminder of what had happened. I couldn’t escape it: the stillness and heavy weight of our crushed dreams. I finally fell asleep out of pure emotional exhaustion.

The next morning, we rose early and drove to the hospital. Arriving at the delivery ward, the mood was somber. I felt that everyone looking at me knew why I was there and didn’t quite know what to say. The dismal situation seemed so incongruous in a place that was meant for excitement and joy. I tried not to cry much. Our nurses were incredibly sensitive and caring but I could sense the awkwardness of the situation. I felt bad for them. This shouldn’t be part of their job.

James was in the operating room with me. He stood and watched our son being delivered, just as he had for our two daughters before him. This time, however, the distinct cry of a newborn was not heard. There were no exuberant cries of “It’s a boy!” James didn’t get to place his finger into a tiny palm and feel the strength of that first grasp. The nurses quietly took Declan from the doctor and began the process of cleaning him. My surgery was finished and we were moved into the recovery room.

They brought us our son. He was wrapped up just like any newborn in a unisex blanket and cap. The nurse placed him in my arms. He was beautiful. He looked perfect in every way. His almond shaped eyes revealed his extra chromosome but that didn’t matter anymore. I stared at him as I held him and cried. James stood next to me and after a while, took him from me to hold him. It was the first time I’d seen James break down. It was painful to see him like that. He held Declan very close to his chest and buried his face in the blanket as his body was racked with grief.

After some time, I told him to call my mom. We hadn’t been sure how Declan was going to look when he was born and we had told my parents to stay with the girls. I found that I still had that urge of a proud parent to show off my precious child and I just knew my mom had to see him. James made the call and Mom arrived just a few minutes later. I handed her my son and I could see the mixed emotion of amazement and sorrow. Our priest came to bless the baby. After he left, we all held Declan one more time. We kept him with us as long as we could, but the time was approaching when we had to say our final goodbyes.

I was the last to take him. I held his tiny hand in mine and kissed his cold forehead. I told him how sorry I was that I had failed him; that for some unknown reason, my body had been unable to deliver him kicking and screaming into this beautiful world. I love you, I whispered against his smooth cheek, and I handed him to the nurse to take away. I had never felt so empty.

The doctor came in and talked with us. He explained that he saw no definite outward sign of what had gone wrong and asked if we wanted an autopsy. We agreed to an in-house examination. We didn’t want him sent away for a full autopsy because, at that point, it just didn’t matter. No test results were going to bring him back. They moved me to a different outpatient recovery wing so I did not have to hear the crying infants on the maternity floor. James and I recovered together. I took full advantage of the morphine pump throughout the night as it dulled both my physical and emotional pain.

The following day, my parents brought the girls to see us. It was time to tell them. James and I gently explained that their brother had gone to heaven. Annika, our 3 year old, was too young to really understand. At 5, Layna grasped the gravity of the situation. She began to cry and asked why. “Why couldn’t he stay here with us, Mommy? Why did he have to die?” I had no answers for her. Her questions mirrored my own.

At the end of their visit, Layna kissed me goodbye. Then she patted my hand and said, “It’s ok, Mommy, we’ll have another baby.” She was so young and hope was so quick to return to her. For me, it took a little longer. The unimaginable had happened and it had torn a dark hole right through my perfect little world.

We were sent home after a few days. I recovered from the surgery and James began the painful journey of making the final arrangements for Declan. My milk came in a day or two later. It was excruciating, physically and emotionally. I broke down one evening and groaned through sobs that my body was making milk for a baby I couldn’t hold. It was just so heartbreaking.

We tried to keep it together for the girls. Each day was waded through in a fog of disbelief and overwhelming sadness. We talked about a gravesite and coffin, but I didn’t want to live in this town forever, and I couldn’t stand the thought of one day leaving him behind. Cremation seemed like a ‘better’ option. The day James brought our son home in a small wooden box, we held it between us, held each other, and cried.

Declan’s memorial service was held at our church. I medicated myself as much as possible and greeted each “I’m sorry” and “Let me know if you need anything” with a polite smile and “Thank you.”  Once again, we said goodbye to our son.

A small piece of advice for people addressing anyone grieving the loss of a loved one: just say I’m sorry. Every time I heard “He’s in a better place” or “God had a different plan,” I was screaming to myself: his place is with ME and any other plan is WRONG. I was confused and angry. It was grossly unfair that so many people abused themselves throughout pregnancy, or didn’t even know they were pregnant, and went on to have perfectly healthy babies. I tried so hard to do everything right. I gave up sushi and hot tubs, took my vitamins every night, and attended every appointment diligently. Why wasn’t it enough? How could this have possibly happened to us? These were questions that would never be answered.

Eventually, my pain meds ran out, my ‘maternity’ leave ended, and James and I found ourselves on the road to recovery. Days turned into weeks and weeks into months. It doesn’t matter how much pain is thrown at you; life has a way of carrying on. Thanksgiving came, followed by Christmas and New Year’s. I drank a lot of wine and spent many quality hours with my girls, albeit not simultaneously. We took a vacation to Williamsburg for a week in January and made new memories. We found the balance between moving on and never forgetting.

There is a rainbow at the end of this tale. During my journey of recovery, I came across the term ‘rainbow baby.’ The following is a description of it:

“It is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn’t mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy, and hope.” (Author unknown)

Our rainbow baby came one year and 20 days after we lost Declan. The beautiful Quinlyn Levay Bass was conceived in March, 2012 and, after a perfectly ordinary, drama-free (although not stress-free!) pregnancy, she was delivered via C-Section on 11/20/12. Her birth was bittersweet. I’d waited almost 2 years and 20 months of pregnancy for a baby to take home in my arms. The death of Declan scarred me, and I am constantly petrified that something is going to happen to Quinnie. Although it probably isn’t fair to her and she will most likely be in therapy 20 years from now because of it, two babies worth of love and anticipation have been showered upon her. She will always be my rainbow, kissed by her brother in heaven before being sent to us.

People say that I am strong.

I am not.

My marriage is strong. Many couples don’t make it through the loss of a child. James is as much reliable and supportive as he is sensitive and empathetic.  He is a wonderful husband and we survived this together and came out the other side closer than ever.

My family is strong. I know without a doubt that my parents would drop anything, anytime we needed them. They understand that just because I don’t always show my emotions, it doesn’t mean I’m not feeling them. My mother was the only person other than me and James who held my son in her arms. She knows more certainly than I do that Declan is our guardian angel. She and my dad took care of our girls and our home while were recovering and their presence made it just a little bit easier.

But me? No, I’m not strong. What I am is present. I have three living children and a husband. I have parents, in-laws, brothers, nieces, and nephews. I have a job and a home. In other words, life goes on. I am persistently on the verge of tears and some days I feel as though I will explode with emotion. On the outside, however, I am very careful not to emote too much lest everything that is pushed down and backed up comes out with it.

I try to live each day.

I try to be present with my living children.

Everything I do in life is for them. Because, if you believe in that sort of thing (which I’d like to), my afterlife will be with my son.

Late at night, after every living creature in my house is asleep, I close my eyes and picture him. I no longer dwell on the life that could have been and I don’t focus on the things that will never happen. I know I’ll never mark his height on the wall, nor chase after him down the street as he rides his bike the first time. I’ll never stay up late worried if he’s ok and I’ll never beam with pride at his graduation.

I know this.

As selfish as this sounds, Declan was mine. I carried him for 37 weeks, nourished him, sang to him, watched him on the monitors at our numerous ultrasounds. I planned for him and worried for him and accepted him. His entire life on this earth was lived within me. He was mine and we will be together again. God can’t keep him all to Himself forever. In the quiet hours of the night, I focus on Declan and I know:

Someday, I will be with my son… Just not today…