February 16th is a day that will always be remembered clearly to me. That was the first day I would hear the term, “Amniotic Band Syndrome”.
PREGNANCY:
I was a mother of two when I got pregnant with Miranda, and even though my boyfriend and I had no desire to have another baby, one was coming and we had to prepare. I called the ob/gyn and made an appointment to start my prenatal care. I was put on the schedule to come in the following week.
I went to my appointment the next week and was handed the usual barrage of papers for new patients to fill out. When it came to the insurance portion of the forms I had left mine blank. Depending upon the outcome of the doctor’s pregnancy test, I would be going to Social Services to apply for Medicaid. I worked in a factory for next to nothing and my boyfriend had just started his job, so insurance coverage and money were rare in our home. Yes, I know…perfect time to reproduce, right?
Once Social Services gave my clinic the “Go-Ahead” on treating me, I had a few more papers to fill out concerning Medicaid. One paper struck me as odd because my cousin was exactly two weeks further along in her pregnancy than I was and she never signed this paper. It stated that Medicaid would only pay for one sonogram throughout your pregnancy. If you wanted a second or third, you had to pay for it. I did already have two children and they were perfectly fine. I signed the paper on the line that indicated I did not want a second sonogram. Since they had already given me one at approximately six weeks, there would be no more. I didn’t realize the importance of a second sonogram. I was going to find out the hard way in a couple more months. Now let me say this; my cousin who was two weeks further along than me, and our neighbor who I was three weeks further along than, both had second(and third) sonograms and never even saw a paper concerning Medicaid and sonograms. Yes, they were both on Medicaid as well.
With the exception of going two weeks beyond the due date, all was well with Mom and Baby. Or so I thought…
February 15th came and I had to go to the hospital for stress tests to make sure all was well. The Doctor decided that he was going to admit me and induce labor. “Sounds good to me”, I thought.
LABOR & BIRTH:
They set me up in a room and ran the usual tests on me. The doctor came in and put the medication in the I. V. to induce my labor. This was about four in the afternoon. I would spend the next 18 hours or so in complete lack of comfort. That is the best way I can describe how I felt. I wasn’t in a great deal of pain, but I couldn’t find a comfortable position to save me. I was miserable and tired.
The next day (Tuesday) my boyfriend’s mother came up with her daughter and granddaughter-in-law. I could feel that the contractions were getting closer and stronger. I told the nurse this and her bright words of wisdom were, “Don’t push”. Yeah, right. I pulled my blankets up under my chin, looked at my boyfriend, and told him that the baby was coming and there was no stopping it. I guess the nurse may have been a little nervous since the doctor was nowhere in the building.
I gave one more good, long push, and the baby was out of me. When the nurse realized what I had done, she came over to pull the sheets off to get to my baby. She looked down and said, “Oh my God”. I asked what was wrong and she wouldn’t answer me. My boyfriend looked at our baby and asked what was wrong with her lip. While all of this is going on I am still lying on my side and I can’t see anything. Nobody would answer my inquiries about my new baby. I was getting very angry by this time. Just then, the Doctor walked in my room.
He walked over to look at my baby in the little warming bed and then walked over to me. I asked him what was wrong with my baby and he said HE DIDN’T KNOW!!! Keep in mind that at this point I don’t even know whether I had a boy or girl. The doctor then asked me if I had drunk or had done any drugs while I was pregnant. I told him he picked a damn fine time to be asking me that. He said they never saw a reason to before. Needless to say, the staff was clueless and my baby was going to be transferred to Roanoke Community Hospital.
I still didn’t know what was wrong with my child, and after asking three times, yelling twice, I finally got to hold my baby. My child was born at 1:25 p.m. and I finally got to look things over for myself at 3:30 p.m. I first checked to see what I had. A beautiful little baby girl was in my arms, and even though she seemed content, she had many things wrong with her. I laid her on the bed and began looking over her entire body.
Amniotic Band Syndrome:
The most obvious thing wrong was her upper lip. Or maybe I should say “Lack there of”. There was an enormous opening where her lip should have been. Her lip was in a big ball on the side of her mouth. She had absolutely no roof at all in her mouth. I could see the inside of her nose by looking in her mouth. I then noticed the little ball of skin on the corner of her left eye. She also had one on the top of her head. I would later learn that those pieces of skin are referred to as “Skin tags”.
Her little fingers were grossly misshapen. Her pointer finger on her left hand was about ½ the size it should’ve been, and her middle finger was about three times as big as it should’ve been. Upon closer observation, I found that all of her fingers were abnormal in one way or another. All but the ring and pinky fingers on her left hand.
I began to remove her blanket to look the rest of her over and that was when I saw her feet. Her feet were turned so far in and up that they could lay flat against her stomach. She was missing the top halves of her big toe and the one next to it on the left foot. Her right leg had a ring of some sort wrapped tightly around the calf. Her torso was the only body part not affected by whatever this was. Just then, the Rescue Squad came in to take her to Roanoke. I could do nothing but cry, so that’s what I did.
The nurses got me to my room a short time later and told me that they would be back in a little while to wash me off. I just nodded in agreement and waited for my door to shut. As soon as it did, I called my mom to tell her about this “Thing” that happened when I didn’t even know.
I hung up with her and got in the shower. I was ready to leave right then and get to where my baby was. My escape plans were interrupted by the nurse who had the misfortune of having to come into my room and explain ANYTHING to me. I believe my boyfriend may have just saved her from getting into a brawl with me. I was so angry that the thought of making someone else feel the way I felt made me happy inside. I was later sorry for those thoughts, but at the time I didn’t care who I hurt. I guess because I knew that they could never feel the pain I felt.
I stayed in the hospital that night (against my will) and was released 9:00 am the next morning. We went straight to Roanoke so I could see my baby and get some answers.
When we got to the N.I.C.U. and saw her, I first noticed how much bigger she was than all those little babies. We weren’t in there for more than 10 minutes before the doctors, nurses, and specialists started coming in to give us the answers we so desperately needed.
February 17th was the first time I had ever heard of Amniotic Band Syndrome. Everything that was wrong with her was because of the A.B.S… They told me that nothing I had done would cause this, but then they said that they don’t know for sure what causes it. So, of course, I wanted to know how they could be so sure that it wasn’t my fault. I don’t remember what the reply was. My mind was with my daughter. I knew that was where I wanted to be. Five minutes later I was back with my baby girl.
My boyfriend and I had already decided on the name “Miranda Lynne” if I had a girl. We couldn’t decide on a boy’s name, so that wasn’t an option. It is really surprising how much weight is lifted off your shoulders by something so simple. It may have been the appreciation of one less thing to think about.
TREATMENT:
Her first year was emotionally, physically, and financially taxing, but she was, and still is, worth every bit.
To date; Miranda has had three lip adhesion surgeries, one adhesion repair, one rhinoplasty, and her orthopedic surgeon operated on her feet to straighten them out as best as he could. Since her upper teeth came in so crooked, she has had to have a couple of them pulled. She has also had tubes put in her ears four different times, but her ear, nose, and throat doctor puts the tubes in while there is another surgery being performed on her. She also had to get glasses this year.
With all that she has been through, and still faces, she is one of the bravest kids I have ever had the pleasure of knowing. She is in the first grade this year and does very well in school. She is slightly spoiled because of it all, but NOT by me. LOL!
I never realized how common A.B.S. and cleft lip/palate were until that cold day in February of ’99.
One piece of advice for any new parents of a baby with these deformities: Make sure you keep the baby at a 45 degree angle at minimum. With no palate, all the liquid goes into the infant’s ears and causes hearing loss. With everything else that must be endured, that is the last thing you need to worry about.
I also want to add that a baby born with these deformities can still be breast fed. Most of the time, anyway. My daughter couldn’t latch on to the nipple, so it was impossible. I did make sure I pumped at least the first week’s colostrum for her. It helps build up the immune system and they need all the help they can get.
Miranda will be seven in a couple of months and is always looking for something new to try. One thing that remains a constant with her is her cheerleading. She loves to be prissy and wear the outfits, as well as cheering for the home team. The fall season will be starting shortly and she can’t wait.
