Diagnosis: Amniotic Band Syndrome
Thirteen years ago I was pregnant with my first baby. All seemed to be going well, according to my doctor, but I think I sensed something was wrong.
I had gained a lot of weight, but I was very tiny when I got pregnant so I thought maybe I needed to. But at 25 weeks, I could count on one hand the times I had felt the baby move. At that appointment I had a new doctor filling in and he got me in the next day for an ultrasound.
The tech did the scan and said a few times that the baby moved, she showed us his little face and we went home. The next day we got a call that changed our lives. The doctor told us that our baby had some serious problems, but they needed to send us to another hospital.
A few days later, we got the devastating news. They told us our baby had a huge opening in his abdomen (too big to close), a severely curved spine, and they weren’t sure he had one of his legs. I had almost no fluid (which is why he wasn’t moving: It was like he was in a tight box). The list of problems went on.
They told us he would never survive and that if by some slight chance he did survive birth, he would know only pain and surgeries and would still not survive. The pain I felt with this news was too much. I remember saying to my husband over and over that I would not have an abortion.
The doctors were so amazing. They talked with us forever and gave us our list of options including being induced or carrying him until I went into labour. We went home to think.
We decided we had to do what was right for our little guy. We didn’t want him to know only suffering when he had absolutely no chance. We decided to go with induction. I was just over 28 weeks when they started my labour and after about 12 hrs of extremely painful labour my little boy was “born with wings.”
When they brought Kody to me he looked so perfect. He had so much dark hair, a cute little nose, perfect little fingers. I didn’t look under the blanket at all that was wrong, I wanted to remember him without all these terrible things. I have so many regrets now. I wish I had held him longer, I wish I had brought my own camera, I wish I had pictures of him with my husband and me, I wish I had bathed him and I wish I had a lock of his hair.
Now there is so much information available about everything, you can make so many more good decisions beforehand. I am thankful that the nurses gave me his footprints and a Polaroid picture, I just wish I had more.
After they took him away, I started to second guess myself. What if he could have been alright, what if I had given him a chance? All the what if’s start to take their toll, and the guilt is consuming. Six weeks later we got a call to come in as they had his autopsy results.
They confirmed he was a boy (his genitals had not formed correctly), but I had always known this in my heart. His heart and lungs were one half and one quater the normal size, respectively. The large opening in his abdominal wall contained his intestines, a kidney, his spleen and liver. He had no bladder, no anus, and his kidney ducts were plugged. His legs had formed to the shape of my stomach as he could not move due to the lack of amniotic fluid. He had a severely curved spine. The list was so much longer.
I knew then that my little boy never had a chance and that he was happy and pain free in heaven. All his problems were caused by something called amniotic band syndrome. Most times when this happens, the mother miscarries. Other times babies are born with a missing finger, toe or arm. In Kody’s case he had all ten fingers and toes, both arms and legs. It is so sad that he could have lived without one of these, but it affected his internal organs so badly that he was far too sick to stay.
I always say that this decision is done out of love for our babies, because it tears our hearts into a million pieces. I went on to have a healthy full-term daughter, and then a healthy full-term son. I then miscarried at 10 weeks. I then got pregnant with my youngest. At 10 weeks I had a massive bleed and to this day we aren’t sure if it was a twin pregnancy or a placental tear.
After my scan the next day, we found out our little one was wiggling everywhere with a strong heartbeat. Eight weeks later, I had at a routine scan back at the big hospital where Kody was born. (They did one with all my pregnancies after Kody.) We got devastating news: Our baby had something wrong with her bowel. They feared Down syndrome or Cystic Fibrosis. They pushed me to have an amnio, but I refused.
I knew the risks of going into premature labour, and I knew I was having her no matter what and did not want to risk that. (I had an amnio with Kody after we knew he would not survive, as we wanted to know if it was a genetic issue).
Well, after many ultrasounds, many sleepless nights, huge worries and fears, our daughter was born by an emergency induction and came out screaming into this world 7 weeks early. She was born very sick. Not only did she have to fight the preemie battles, she had three different, very serious problems with her bowel. We were told that all were common problems, but it was unusual for them to all occur together.
Our little fighter had three major surgeries in her first four weeks and had three blood transfusions. She fought hard and came home well on her due date. She endured so much to get well to come home, I am so amazed at her strength. I thank God every day for all my little miracles. I know that when she was so sick in the hospital all those weeks she had Kody, her very own special guardian angel, looking out for her.
I truly believe that Kody is our guardian angel and watches over our family. I know that Kody’s gift to me was the children I went on to have. I will always remember my special little guy. The memories may be painful, but they are what I have left to remember him by, and for these I am grateful. I am thankful I got to know him if only for a little while.
I talk to my children about Kody often and want them to know about their big brother. They ask questions and I answer as best I can. All my children are happy, healthy and spoiled and for this I thank God.