Sarah’s Story

Amniotic band syndrome. What the hell is amniotic band syndrome, and why was it happening to me? These are the thoughts I thought for weeks before I lost my daughter Emily to this unusually rare in-uterine disorder.

Women are built to produce children. I used to be the kind of feminist that would laugh in the face of that concept, now I am the kind of feminist that has felt what maternal instinct can do to someone. When the doctors told me that Emily was missing fingers because my uterus was failing at what it was supposed to do, protect her, and I looked at my kitchen knives and was possessed to cut off my own out of empathy, I can say for the first time in my life, I felt sane. I was reacting like a mother.

The feeling that your body has failed at what it is meant to do is something that I cannot explain no matter how hard I try. I know now what amniotic band syndrome is, and although I still do not understand why it happened to me, I know the courage it has given me, and the new insight the loss of my baby has given me into being a woman.

My amniotic sac ruptured prematurely, creating what I consider nature’s rubber bands. Spaghetti thin membranes floating in the amniotic fluid, that stuck to my daughter, cutting the circulation off to her fingers, hand, eventually throat, and her umbilical cord. One of my doctors told my boyfriend and I that it was just “bad luck”. This is the expert medical advice given to devastated young parents; I guess that’s what they’re teaching these days in medical school. Thank you. I taught myself what amniotic band syndrome was, through experience.

When Michael and I found out we were having a baby, we had been dating for two months. I was six weeks along, and we chose a noble route to go through with the pregnancy and be parents. Eighteen and twenty-one, young and although we were not together long, I can honestly say our love was, and still is, very strong. The pro-lifers would have been proud. Now what is a twenty-one year old pro-choice feminist doing deciding to have a baby when she has her whole life ahead of her might you ask? I was doing what my heart told me to do. I have in the past, but will never again, tell a young mother that abortion is the way to go, because I understand from a new perspective what knowing that there is a life, a heart not your own, beating inside you can do to your brain. In my eyes, I had a healthy uterus, I was strong and in good enough health to bear a child. My words in regard to aborting my baby at six weeks was that if I was medically unable to have a baby, or I knew the baby wouldn’t be healthy, I would not allow the pregnancy to continue. Well, god, whoever she, he, or it is, took my words and threw them in my face four months later.

When I was diagnosed with amniotic band syndrome, it was not explained to me initially that a late term pregnancy termination would be something that Michael and I would need to consider. My gynecologist mentioned it to me the day before I traveled to the Children’s Hospital of Philadelphia, and my first reaction was absolutely not. Mind you, at this time we were only aware that Emily was missing fingers. I am not a superficial person, and I would never end someone’s life over something as menial as fingers. If only I knew at that point what we would be in for in the next few weeks, I would have considered and prepared myself to make such a serious decision.

In Philadelphia, after what I consider the longest day of my life, a doctor sat down with my family, and basically determined the fate of my daughter. The bands had wrapped themselves around her umbilical cord, and even though at that moment they weren’t constricting the blood flow at an alarming rate then, there was no saying what they would be doing tomorrow. In addition to that fact, there was a large cellophane like piece of tissue resting over her face, which I learned after everything was said and done had moved and wrapped itself around her neck like a noose. Michael and I came to the grim realization that our baby was going to die, or have such severe damage to her brain and body that even if she was alive physically, she would have just gone through life dead basically anyway. It was now in our hands to decide the fate of another life.

Asking that question of yourself is the most difficult thing anyone can ever do. As hard as it was for Michael, as a mother it is almost impossible. There was no one for me to turn to outside of our families; late term abortion is possibly the most controversial issue in regard to abortion. Everything I read about it was either published by god fearing, pro-life enthusiasts, or by die-hard feminists that couldn’t turn on their maternal instincts if they were in a room with one hundred babies.

The last time I saw Emily was five minutes before a doctor in New York City stopped her heart. I was alone, and I ran the ultrasound wand over my abdomen and said goodbye to my precious angel.

What I chose to do was the hardest thing I ever had to do in my life. I wrote my story the way I did because I want other women to understand that its ok to do what Michael and I had to do.

I did go into labor, I wasn’t supposed to, I was just highly sensitive to the hormones they gave me. Waking up after enduring the pain I went through and having nothing was indeed a horrible feeling, but when a doctor tells you that your child is not going to be healthy, and even if she is physically alive, will be unable to do anything and basically go through life in a coma state, knowing you as her mother have helped her avoid years of pain and released her soul back into the heavens, is comforting.

2 thoughts on “Sarah’s Story

  1. I hate to bring up such a trivial thing in respect to what you been through but I grew up without toes on my left foot all of them but the big toe on my left foot are just partially formed it looks like I have four pinky toes in a row growing up I never really knew what it was I just knew I was born like that and never paid any mind till I was an adult around 16/17 it really started to bother me to go to the beach or having a GF and have to explain it eventually but long story short I had a girlfriend get diagnosed with some rare disorder where her ligaments were deteriorating and when i went with her for the visit so the dr can go over her surgery she needed i kind of brought myself up to take her mind off what she was about to be younf through the Dr got all excited because he “never saw someone with amniotic band syndrome” and he asked to see it so I reluctantly pulled my shoes off and showed him he said “oh wow consider yourself one of the lucky ones because you have no idea how bad that all could of turned out for you” which is probably what helps when it starts to bother me because hes right it could of been worse and despite having 4 piny toes I still came in fist place on the track

  2. Thank you for telling your story. I too had to terminate my first much wanted pregnancy due to amniotic band syndrome due to bands attached to my daughter’s abdominal wall which did not allow her wall to grow properly and exposed many of her organs. I have felt alone in this decision until now.

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