Kody’s Story

Before I had my son, Kody, I had never heard of Amniotic Band Syndrome. That was 12 years ago, and its only been within the past couple of years that I’ve heard other stories of ABS and its devastation.

I became pregnant with Kody in August 1989. My husband and I were so excited about having our first baby. At 13 weeks my ultrasound was normal and baby was fine. At 25 weeks, the doctor was concerned with my small size and the fact that I hadn’t been feeling much movement so I was sent for a scan. They next day I got the call that changed our lives. The scan showed that there were serious problems with our baby but they were unsure of exactly what and wanted to send us to another hospital with better equipment. Two days later they scanned me and gave us devastating results.

We were told our baby had severe fetal malformations involving his spine and huge abdominal wall defect (an omphalcocele – i.e. a huge opening, they thought). They baby was now measuring 3 weeks smaller than he should be and there was very little fetal movement. At 25 weeks, I could count on one hand the number of times I had felt him move. They said his abdominal cavity was very small and they had trouble seeing some of his internal organs very well. They told us that he had very little chance of making it to term, let alone being born alive. If by some slight chance he was born alive they expected that he would require extensive and extraordinary surgery to have any hope of survival and that he would be ventilator dependent and that he wouldn’t be expected to survive past his first birthday. The doctors honestly felt I would not even carry to term.

We made the heart-wrenching decision to induce labour. At 28 weeks our baby boy was born an angel. He was beautiful, but I could not bring myself to look under the blanket they had wrapped him in. I held him and loved him for the little time I could. I wanted to remember his beautiful face and not all the other things.

When his autopsy results came in, we were horrified. They had only diagnosed maybe 10% of his problems. When he was born they could not tell that he was a boy, his genitals had not formed correctly, but I knew in my heart. In his autopsy results very little was normal. The saddest part to me was that his brain was one of the things they stated was normal and ahead of gestational age. They also said his esophagus, larnyx, vocal cords, and thymus were normal. Basically, everything else was wrong. Kody did have all four limbs and all ten toes and fingers. I find this sad, he could have lived without some of those, but ABS did way too much damage to him internally. Kody could never have survived as his lungs were far too small (4 times smaller than they should have been) and so was his heart (1/2 the normal size). Many of his organs were on the outside of his stomach wall, including his intestinal tract, liver, spleen, and right kidney. He no bladder and an imperforate anus. He had hardened joints and fixed hip joints. I could go on and on with all my baby’s problems but to me he looked perfect. He had lots of dark hair, a cute upturned nose, and these tiny little fingers, but he was so, so sick. Even inside of me he was probably in pain. I had so little fluid he could basically not move, and his legs had formed to the shape of my stomach.

The autopsy results were so horrifying but we knew our baby had no chance. They said that had he made it to term, which was unlikely, and had he been born alive, he would have died quickly due to his small lungs. They said that his abnormalities were incompatible with life. They also said that the findings were that of limb body wall complex which is also know as Amniotic Band Syndrome. Our little guy had no chance and I miss him still so much today.

I went on to have a full-term healthy daughter Jayme, then a full-term healthy son Kole, then I miscarried at 10 weeks . I then became pregnant again and they saw on scan that our baby had a bowel problem. We were devastated. I had an emergency induction at 33 weeks and Kyana was born screaming. She had to undergo 3 major surgeries to repair 3 serious bowel problems and spent 47 days in hospital and came home completely well on her due date. I believe Kody was her guardian angel watching over her. I also believe Kody’s gift to me was my other 3 children. I will always miss him and I always say…”He was too sick to stay so kisses and hugs I send every day”. When I had Kody I knew nothing about ABS. My hope is that by sharing Kody’s story other people will learn more about ABS.

Thank you for listening,