A mother's personal story

The following is one mother’s personal story, used with permission; however, names have been changed.

As I see my second son’s birthday come and go, I find myself reflecting on the nightmare my husband and I faced. This was not a planned pregnancy. My husband was 45 years old and I was 34. I had a four year old at home and I had finally begun to get somewhere in my career. I had finished two hard years of full-time school to obtain my teaching degree and was working as a teacher-on-call. Finally my life was feeling manageable. My son was beginning to get more independent and the intensity of parenting a toddler seemed to be easing off. Then, “The Night” happened. I knew almost instantly that I was pregnant. I had wanted to have another child, but even so it took me by surprise. My life was finally coming together and a pregnancy would push me back to square one. My husband’s reaction did nothing to reassure me. He was less than thrilled. “I wish I could say I’m happy about this, but I can’t.” His reaction was not really a shock to me. With our first child he had been angry at first because he thought I had somehow tricked him. However, he became a fabulous father and adored our son. You would almost think it had been all his idea. But today here I was, pregnant, afraid and feeling somehow alone. Little did I know that this feeling would intensify to an unbearable level.

As my baby grew inside me, I did become more and more excited about him. My husband adjusted faster this time and my family was looking forward to another baby. At twenty weeks I went in for a routine ultrasound. Our oldest son was going with me and wanted very much to watch his sibling move inside Mommy. We left the office afterwards feeling happy and more connected to the baby. Two days later the ultrasound clinic phoned and said they had seen some abnormality with the baby. They wanted us to go to Women’s Hospital for a second opinion. I was so frightened; I got off the phone and burst into tears. “There’s something wrong with our baby”, I told my husband. We picked up the ultrasound pictures to take them with us on Monday. It scared me that they felt it was imperative we see the specialists as soon as possible. We agonized all weekend, worrying about the results of the tests. We had opened the envelope and read “possible Dandy Walker Variant with a brain cyst”. My husband made the mistake of looking it up on the Internet. The symptoms and side effects terrified us.

On Monday, I went with my mother to the appointment. I was still holding onto some hope that it was all a mistake. This could not be happening to me. They did an ultrasound again but it was not clear. They did another more intrusive test. The results were concrete. The woman doctor who examined the pictures was a specialist in this condition. I tried to remain dignified through the whole ordeal but the tears kept streaming down my face. “I’m sorry”, she said. “I hate this part of my job.” She told me that my baby had a hole in his skull and brain tissue was sticking outside the skull and forming a cyst. The hole would be a form of Spina Bifida. Also, his cerebellum which is responsible for motor activity, balance and coordination was not there. “I’m sorry,” she said again. As she left the examining room, I fell into my mother’s arms and sobbed with a deep heart and wrenching grief. I cried for all the shattered dreams of a perfect healthy baby. I cried for my little family and knew we would never be the same. I thought of how we take for granted the perfect and precious gift of life God gives us. A healthy child is a blessing we should be thankful for every minute of our lives. I felt numb and in shock for the rest of the day. We had a few hours break, and then my husband and I had to meet with the geneticists and the genetic counsellors. I couldn’t stop crying. My husband remained very stoic. I had no idea how he was really feeling. He asked intelligent and informed questions and seemed to get all the answers he needed. After the doctors finished telling us what we would most likely be facing, they told us we had two weeks to make a decision about “terminating the pregnancy”. I thought how odd it was that they never referred to our child as a baby. The baby whom I had carried and nurtured in my womb for almost six months. Now they wanted to terminate him because his “quality of life” would not be up to their standards. I told them that would not be an option for me and I did not want to discuss it. My husband, however, said nothing. They continued to give us a very clinical and scientific presentation of what we would be facing “if we chose to continue with the pregnancy.” My husband trusted in their scientific wisdom and challenged nothing of what they had to say. After all, they were the experts. As we drove home that day, my husband absolutely blind-sided me by saying our obvious course of action would have to be abortion. I told him I loved him but I could not do what he was asking. My decision to choose life had been made many years ago and in my heart there was no compromise. This was who I was and I would not change it for anyone under any circumstances. He was very angry. He started to speak ever so logically and analytically. It was so clear to him what we needed to do. I know he was frightened and he felt he couldn’t possibly live with this. As we drove home, I told myself I just wanted to die. I wondered if it was possible to die from grief. Just as quickly, I thought of our wonderful 4-year-old son who, ironically, was celebrating his 4th birthday that day. I needed to be strong, but I felt very weary. I couldn’t help thinking that this was just the beginning.

I had invited the grandparents over for birthday cake and tea that evening and decided to go ahead with it for my son’s sake. What happened that night was an overwhelming show of support from my family. My two brothers, sister and their families arrived at our door. They wrapped their arms around me and gave me their unconditional love and support. My parents looked me straight in the eye and said,”We will get through this; everything will be o.k.” My faith helped me to believe them. My family understood my decision. They knew who I was and that there was no other decision for me. It was just a matter of having the strength to get through it. I had been raised and nurtured to cherish the gift of life at all stages, from conception to its natural end. This belief was a gift and a legacy from my incredible parents. It was also a gift by the grace of God.

My husband’s family was not so sure of my decision. They supported my husband’s position. Whatever position they had, they wanted to support us in whatever we decided. My sister-in-law knew that this may very well be the hardest thing my husband and I would ever go through in our marriage and she wanted to support us and give us her spiritual encouragement.

It is so hard to sit and write about the incredible stress and pressure I was under for the next 3 and a half months. My husband and his family believed I would come to my senses and do the “right thing”. They believed that a child should not be brought into this world if its quality of life is not what it should be. Well, what should that be? Where should we draw the line? Who lives and who diesefore he or she has a chance to touch people’s lives in a very special way? This baby was given to me as a gift and I needed to be strong enough to accept him as he was, one of God’s truly incredible and unique creations. I prayed everyday for that strength. I embraced my faith and wrapped it around me like a shield. I was not invincible though. I had days when I thought, “Hey, I can do this!”. I also had days of absolute panic and fear. It must have been so hard for my husband and his family. They did not have the strong foundation of faith and trust that I was now leaning on for support. It was frightening for all of us.

I wanted to help my husband in his grief and disappointment, but we were unable to reach out to each other. After the initial shock of the baby’s condition, I stopped worrying about the baby. God’s Will would be done. The impending breakup of my family was my biggest worry. That was what kept me awake at night as I lay in bed with my husband. Even though we were inches apart in reality, mentally we were miles apart. This left a pain in my chest almost daily and headaches that never left me. All I could do was pray.

The Dandy Walker spectrum was so large. We had no idea what kinds of problems our baby would be facing. My husband just wanted it all to go away. He told me we could get rid of this one and try again when I was healthy. He did not understand that this was my baby, my child; he could not just go away. I would not “get over” him. I was his mother and this I knew from the moment he was conceived. Nothing on earth or in the heavens could change that. He was mine for all time! My husband tried all kinds of persuasion, as well as manipulation. He told me that this would be detrimental to our four year old and it would ruin his life. He told me we would never be the same. I didn’t think any family stayed the same after a new baby. I tentatively suggested adoption to my husband. I guess I was trying to throw him some sort of life-line or compromise. I wasn’t sure in my heart if I could do that but at the time I was facing the break-up of my family. I knew I could lose my husband over this. In my mind I started to wonder what it was going to be like to be a single mother. I knew if I had to, I would have this baby alone; of course, I didn’t want my children to be without their father. It was so stressful! I loved my husband but this was a battle I could not, and would not lose. The night it all exploded was the night before we were scheduled for counselling. I told my husband I wanted to name the baby Conrad William. He said we were NOT naming the baby because the baby was NOT coming home to our house. I guess this was the first indication to him that I would not give up the baby for adoption. The argument escalated from there. All of the unsaid things we had both been keeping inside for the last two weeks burst out. Then my husband blurted out that he refused to have a retard for a son. As soon as he said the words, I could see how he wished he could pull those words right back into his mouth. But it was too late. I was horrified and hurt. We then started fighting about custody of our first son. It was a messy argument but then it suddenly ended. My husband told me how much he cared for me and in his own way he apologized. He said that he wanted to go with me to the counselling in the morning. So we went to bed.

The next day during the counselling session we were able to talk about the whole situation. My husband’s attitude seemed to change after that. He was truly courageous in his decision. He said he was in for the long run; however, he was not very optimistic. For him, it was not a leap of faith, but more like a step off a cliff into the darkness. He did not have the same trust in God that I did, so his courage was incredible to me. He chose to reach for my hand and stand together. This was our first miracle. I know that it was only by the grace of God that I felt no anger or resentment towards my husband. I was able to feel only compassion for his suffering. The second miracle was the ultrasounds. They began to get better. The doctors were now saying that there was no brain tissue in the sac outside the skull. However, the cerebellum was smaller than normal. They did not know for sure what this would mean for the baby. I prayed that God would give me the strength to accept this challenge and be the best mother I could be.

During the next three months we had thousands of people from all across Canada, U.S.A., Rome, Poland and Russia praying for us. My brother had reached out to people of all denominations on the Internet. We even had entire schools praying for us. It was truly incredible. This baby, before he was even born, touched the lives of so many people. I knew people whose faith had deepened by this little baby’s existence. People everywhere were hearing the story of Baby Conrad. This was all so powerful. Thousands of people I didn’t even know and would never know were giving me strength and inspiration. Most surprising was the number of people who came forward to share similar stories of their own. They told us how they too had had ultrasounds that had been wrong and doctors who had been wrong. It seemed everywhere I went, someone was sharing their life stories with me. I felt very positive and encouraged.

I went into labour on July 16, 2000 at 3:00 a.m. It was exciting and frightening at the same time. After a few complications and twelve hours, Conrad William came into this world to dazzle and defy all odds. He was so perfect. And I’m not just saying that because I’m his mother. Minutes after he was born, he lifted his head and looked his dad straight in the eye. It was truly poetic. My husband had tears in his eyes and fell in love instantly.

Conrad did indeed have a cyst on the back of his head when he was born, but the doctors found no brain tissue inside the cyst. However, because it caused Conrad pain, the doctors decided to remove it two months later. The surgery couldn’t have gone better and he only had to stay in the hospital for one day.

His cerebellum is still smaller than normal. We saw Spina Bifida specialists and Neuro-surgeons for six months after Conrad’s birth. So far everything seems to be O.K. So our little guy with the small cerebellum is awesome. He is bright and active and has taken his first steps. It’s hard to remember the reality of that nightmare. My husband says there isn’t a day that he doesn’t look at his sons without thinking of the precious gifts he has been given. I too am in awe of the goodness of God and the miracle of life.

Conrad’s story is ongoing. I will always watch him with the doctors’ horrible words ringing in my head. Every time he reaches a milestone on time, I give a sigh of relief. Every time he stumbles as he learns to walk, I wonder if this will be the beginning of his problems. But the joy we get from him outshines all that, and we stare in wonderment at this precious gift of ours. Every step he takes, every time he turns his angelic face to us and beams with joy and every giggle he utters is a miracle.

I’m not sure why God granted us the miracles he did. Our little family is still together and Conrad is healthy. Our marriage is stronger and has a depth to it that I can only attribute to the hardship we have endured. The support, encouragement and inspiration we received from our community, our friends and our family was overwhelming. The power of prayer and the compassion of everyone brings us hope. We are truly thankful and grateful for life’s miracles.