This article was written by Ariel Darby
In 2001, at the age of 3, my son Ashton was diagnosed with Adrenoleukodystrophy. The disease is the body's inability to break down fat, leaving the fat to build up on the brain causing immobility, incontinence, memory loss and death in boys under the age of 10 if the disease presents itself in childhood. The disease can take two forms; the first in childhood with death resulting, the second in adulthood. You never know which form a child will have and both forms are found in my family history. The disease is X-linked, passed on by women who are carriers, and only effects males. Females may have symptoms later in life, but will not actually get the disease. Adrenoleukodystrophy is also linked to Addison's disease, which causes a weakening of the immune system and requires the use of daily steroids to fight against flus and colds, etc. Winter months often lead to hospital visits or admission to the Intensive Care Unit.
Upon learning of my son's condition, I asked his physician for answers. Frustratingly, he could not tell me any more than I found myself on the internet and he said I could never have healthy children. From there I took matters into my own hands. I enrolled Ashton in a case study with the top Adrenoleukodystrophy doctors in the country. I knew that if the study did not help Ashton during his first 10 years, the information gathered could help other children in the future.
In July 2009, my husband and I realized how much we longed for a son together after experiencing a pregnancy loss. At that time, we had two girls together and Ashton from my prior relationship. We knew our odds were 1 in 25 for a healthy son or daughter. We also knew we could test the baby via CVS at 11 weeks and that once a baby was born, testing would be denied unless it was a boy.
We tried for our little boy to complete our family. As soon as the pregnancy test was positive many emotions came to light – the excitement and the fear of having to do the unspeakable if our news was not what we wanted to hear. I tried to stay positive while preparing for the worst case scenario.
I had a feeling that the baby was a boy and was not with us to stay. During the CVS procedure I saw his little arms, legs, hands and feet. I could see his movements and, most impressively, I could hear his little heartbeat. At that moment his life was strong within me. I looked at him knowing that I wanted him while also knowing that it might not be possible.
The days and weeks following the CVS were agony. Could we keep our baby? Would we have the chance to bond with him? Not knowing what our future held was worrisome.
The phone rang to say we were expecting a boy. My heart sank. I prayed as much as I could for my little boy. We held on for the second part of the news. The next day we learned that the son we had so longed for had Adrenoleukodystrophy.
All I could do was think of how hard life is for Ashton. I wanted to deny the diagnosis. I was so angry that this was our reality.
I asked my husband to make the decision whether or not to terminate the pregnancy. I could not bear the first step that needed to be taken. I had always opposed terminations and thought people who made that choice were careless with no regard to human life. Once faced with the decision myself, I realized that terminations also applied to another group of women: those who want their children, but for reasons only known to God, could not keep their children as they would not have a full quality of life.
I prayed my appointment would come soon and that my little boy would feel no pain. It was the hardest decision I have ever had to make. The guilt was overwhelming. It was my fault that the life I had just witnessed on the ultrasound monitor would come to an end. I begged for forgiveness and questioned why good people can have such hardship. Wasn't it enough that I had to live in fear for 10 years worrying about burying my living son? Now I have to say goodbye to this little one too?
I worked up until the day before the surgery to keep my mind occupied only to crash with tears the morning of. I cried the entire 45 minute drive to the hospital. Once at the hospital, I was asked to place two pills into my mouth – one in each cheek. I prayed that these pills would stop my baby's heart so that he could pass peacefully.
I was numb and an emotional wreck, but there was no way out knowing the life he would have. I entered the surgery prep room still crying. As I laid there waiting for my turn in the OR, having contractions and bleeding, the surgery staff treated me as though it was nothing at all. I was labeled as a careless mother like much of society depicts women in my situation to be.
I was then wheeled into the operating room. My emotions stung me again. I was a mother in pain who did not want to lose her baby. I reached out for any alternative as the IV was put into my arm. I asked the doctor a myriad of questions: Was there a more reliable way of having a healthy son via IVF? I cried out loud so all could hear my desperation for a son. I wanted everyone in the room to know this was a baby that I wanted, not one being taken willingly.
As I woke up, I began to cry. I knew he was gone. My belly was empty just shy of being 4 months pregnant. The nurse came in to have me to get up and pee so I could be released.
The disgust on her face was enough to make me feel ashamed of what I had done. Did she not know that I wanted him with me and loved him? Why were other mothers able to leave with their babies and I couldn't?
I was discharged as if nothing had happened to me, as if I did not just lose my baby. No one bothered to ask me how I felt emotionally or told me there was help out there when I was ready to let my secret out. I cried the whole way home.
One by one my kids would cry with me as they saw their mother's sadness. At that time they were 9, 5, and 2 years old. How could I tell them they just lost a brother? My son already fearing for his own life, I could not tell him his little brother could not stay because he had the same illnesses.
My surgery was on a Friday and I returned to work the following Monday to act as if nothing had happened for the shame and guilt of my decision. I should have taken time to grieve for him at home. Instead, I cried in my car to and from work, at work hiding behind my chair, in the shower, and in the silence as I went to bed at night and woke in the morning.
It is true what they say about losses and not wanting to be in public. I was so sad about no longer being pregnant but looking like I was. I was jealous of other pregnant women and wanted them to know I had just lost my son. I wanted them to not be as naïve as I was and to know that not all pregnancies end with a baby. I wanted them to know how precious life is and to love their children, not to take any minute with them for granted. They needed to be thankful for their gift of life.
Good news came weeks later that Ashton at the age of 10 was going to live. His disease had stayed dormant. At some point, his disease will take hold. For now, he can be a boy, however, he still fears for his life. The news allowed me to take a deep breath and have some comfort of not having to bury this son too.
Months later I contacted the doctor that performed my termination questioning what had happened to my son's remains. There was no record of what was done with them. Had I known my options then, I would have chosen to keep them and place them in a pendant. This was the hardest part of losing him. Because he was under 20 weeks, his life was not acknowledged.
Correcting this has become my mission. I contacted my doctor and begged for him to let others following me know their options. Their babies matter no matter how small they are. Most importantly, no mother should suffer in silence with the guilt and shame associated with not being able to keep the baby they wanted. I realized it was up to me to let others know that terminations are losses too. Yes I made the decision not to keep my baby, but I wanted him and mourned for him just the same as any other mother who has had any other loss.
A year later while preparing for an IVF cycle, we tried one last time for a son. I knew from the moment the pregnancy test was positive that this one was mine to keep. Again I had to keep my excitement to a minimum knowing the difficulty I had just gone through. A couple of weeks later, I was sitting at a Share event when a woman approached me. I was sitting at the table explaining what Share is and what we do. She looked at me and told me that I was pregnant and that the baby, saying the word “he” was a healthy boy and everything would be okay this time. I felt chills and called my mother, the only person who knew other than my husband. She told me that the woman must have been an angel sent to me to help me relax and stay positive. I hoped that she was right, and still kept my feelings at a distance. I had a hard time hearing the heartbeat as I had before. Through the CVS testing I wanted to look at him but had flashbacks of his lost brother the year before. At 12 weeks, my maternal instincts and the woman were correct; we had conceived a healthy baby boy. I cried for the baby we could keep and the one we couldn't.
Until six months into the pregnancy, I would not give myself permission to acknowledge him. I knew he deserved my love but I needed to forgive myself for the difficult decision not to keep his brother. My turning point was writing a letter from our lost baby, later named Brett Nathaniel, to our new baby asking him to take care of his mother for she was very sad but loved him very much. The letter completed the bridge and relationship between these two little boys and allowed me to know it was okay to have Lucas in our lives – that there were no hard feelings. This was the moment that I used to separate the two brothers.
Lucas Nathaniel was born in March of 2011. His middle name is in honor of his brother Brett forever bonding them as brothers.
My journey continues as I see Lucas's face and think of his brother. I know they will forever have a bond as subsequent pregnancies do. My doctor continues to let others, who find themselves in a situation like mine, know that there is someone who understands. He has become an advocate as my journey showed him little lives are precious too. I continue as a board member of Share Southern Vermont to spread the word about loss and hope through sadness and happiness as the rainbow babies come to life. I know I am honoring my son, Brett, in the work that I do and the lives I touch. Had I not been promoting Share that day, my angel would not have appeared to guide me to Lucas.