Bracher, Amanda

Amanda is getting ready to celebrate her 12th birthday on September 20. It is hard to believe that she will be 12! Amanda was a full term baby. I had no problems with my pregnancy. I had an ultrasound at 9 weeks only. At that time, there was only one ultrasound done unless complications arose. When I delivered my 8lb 2oz baby girl, she did not breathe the way the doctor expected. She was removed immediately and placed on a table where I watched the nurses and doctors do CPR. She was taken to the intensive care unit. Two hours later, we received the news......Amanda had a hernia in her diaphragm.......My husband broke the news to me. He had spent the last two hours in the intensive care unit watching her closely. I laid in the recovery room with my mother. All I could do was pray. Prayer saved her life. Being Christian, we decided to have her baptized that night. It was so important to me that she receive that sacrament, as I felt this would help pull her through. She was given a 10% chance of survival. She was taken to Children’s hospital. We were told that she had to be stabilized prior to her surgery. My husband went with her to the hospital and made sure she was ok. She did well once on oxygen, and IV's. I was given a Polaroid picture of her which did not leave my side. I remember hearing other babies in the hospital crying. I would cringe at the sound. I wanted so badly to be with her and hear her cry. When I was discharged, I went immediately to her. Her surgeon was pleased with her birth weight, and was hopeful that this would pull her through. She had surgery to repair the hernia, which took about 2 hours. This was the longest 2 hours. The pain I felt knowing my baby was fighting for her life was unbearable. The doctor said she did well, and had that "piece" of a lung, which is what she needed to survive. I visited her constantly. I cherished the time I could hold her hand and sing to her. I reassured her every minute I could that I loved her. My sister gave me a tape recording of her piano music. I kept it with Amanda and the nurses would play the music throughout the days. There was no "night" on the unit......it was always the same. We got to know many of the other parents on the unit, and watched each one take their baby home. We longed to take her home. She was progressing well at the hospital, and after a small "back slide", she was discharged in 3 weeks. About 3 days prior to her discharge, I became worried about nursing her. I had diligently prepared myself for this gift of love, but was realistic that she possibly would not latch on. After one "not so pleasant" try, she latched on, and nursed successfully for several months.

I remember the nurses telling me that most of the children with this birth defect are lucky to survive, and they were amazed that she was discharged so healthy only 3 weeks later. I was just glad to have her home. I remember getting up all night long and making sure she was still breathing. After she was older, we put her in her bedroom with a baby monitor. I would lay there in bed with the monitor next to my ear, listening at her every breath. I would wake up out of a dead sleep if she coughed or took a long breath. She had several episodes of wheezing which landed her in the hospital frequently, but seemed to be doing well. Her development initially was delayed. She had problems with sitting up on her own. The doctor said this was because of the nerves and muscles that were injured during the surgery. However, at her 1st birthday, she was beginning to stand and walk. She was precious and the joy of our life.

Her next 3 years were rough. At her checkup when she was 2 1/2 years old, the doctor was concerned that her reflux was too active. She had several tests done, and 6 months later, and 7 hospitalizations later, she was admitted to Children’s for a surgery called a Nissen. This surgery was far more complicated and required a longer recuperation time, but we noticed a significant difference in her about 2 months after the surgery. The doctor informed us that sometimes with a diaphragmatic hernia, there is problems with the reflux muscle, and that is why she needed the surgery. By the time she was 3 1/2 years old, and 6 months into recovery, she was successfully putting on weight, and looked the healthiest ever. She had 10 hospitalizations during the first 3 years of her young life. Most of these were related to the asthma that took over as a reaction to the weak left lung, and the damage from the reflux acid.

These 7 years in school have not been problem free. It is hard for her to ignore the comments about the scars that children have seen over the years at gym class, swimming pools, slumber parties, etc. I did every thing I could to prevent these things from happening, but they do. She also has a very active bowel. When she has to go, don't have her wait until recess is over!! All the teachers were informed each year of her need to be excused to the bathroom at any time. They were cooperative, until a substitute teacher was there. I remember Amanda being humiliated because she needed to go to the bathroom, but had to wait until "time". Well, it didn't work. Another problem she has had is gym class. She was responsible to learn a "back bridge". When she did this, it pulled every muscle in her abdomen. We ended up at the ER, and several days later, after many tests, it was determined that she would be fine. To this day, she does not do this exercise.

I believe that my daughter is a walking miracle, and we have been blessed with her love. She hopes to someday be a teacher for disabled children. I believe that her heart is big enough to handle this challenge. She is nurturing, and loving and patient. The world is lucky to have her in it. Her name is Amanda, which means "deserving of love".....and that she is.

Written by Amanda's mom, Theres Bracher (Ohio)
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