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    CDH from three perspectives

    CDH from three perspectives.

    A Mothers...
    Hello, my name is Paula and I have a child that was born with a diaphragmatic hernia. The pregnancy was uneventful and we were not expecting any problems. When my husband cut the umbilical cord, Amy started turning blue and would not breath. That was when we knew something was wrong.
    Amy was rushed from the hospital to the children’s hospital, where she had surgery four hours after birth. My husband followed the ambulance to the hospital while I had to stay over night.
    When I got to the children’s hospital and was finally able to see her, there was a card on her bed saying, “Baby”. I told the nurse that the baby had a name and it was Amy. The nurse told me not to name her. “She might not live and you can then use that name on another baby.” That made me upset. Shouldn’t an infant whether it lives or dies, deserve a name? So I made the nurse put the name Amy on her bed.
    My mother wanted Amy to be baptized in the hospital in case she did not survive. I told her no, that Amy would be baptized in church when she gets released. I had a peace in me that Amy was not going to die. I could not explain it to my mom, which was a sore subject between us for a length of time.
    My mom offered to come and help when Amy was in hospital. I told her, “No, come for the baptism.” The idea of having anyone in my home was too much for me to comprehend. My in-laws called and said that they were coming and I told them not to come. They were upset with me and I told them that I told my own parents not to come. They said that they were coming anyway. I hung up the phone and cried. How could someone come when I could not handle company at this time? They ended up driving up for the day and left after they saw Amy.
    The day that I was to bring Amy home, a doctor said that the pediatrician would not release her from the hospital. I was heart broken. Here I was all excited to bring Amy home and that was not going to happen. The pediatrician came in and explained to me that releasing a baby on a Friday was not a good idea. If I had any questions or thought that there was a problem, the doctor’s office would be closed and I would not be able to reach him. Even though I was disappointed, I understood his reasoning.
    After three weeks, we were able to finally bring Amy home from the children’s hospital. It was very different from when I brought my oldest home. We had oxygen tanks and a heart monitor. We were told to let Amy cry to build up her lungs, but not to cry too much so she would not get exhausted. Trying to find the happy medium was impossible.
    Amy did not like to be held very much, which I decided it had to do with the fact that she was not held at all the first two and a half weeks of her life. We would hold Amy until she would become agitated and then we would lay her down.
    The first night she was home was a very long night. Every time Amy would move, the heart monitor’s alarm would go off.
    The medical bills started to come in the mail. Our insurance company was slow at paying the bills and we were getting letters threatening to send us to collections. Also, we were getting bills from doctors that we did not even know. I would take them into the pediatrician’s office to find out who they were and what they had to do with Amy.
    My husband was starting to get upset about the bills. We did not know what we had to pay due to the slow response on our insurance’s part. I remember crying one afternoon on the couch because my husband was upset about how much oxygen we were using and the bills for the tanks.
    After the insurance paid the bills and we found out what our cost was, things started to settle down. We then found small victories as we did not need the heart monitor and then the oxygen tank.
    When Amy was three months old, we traveled down to Orange County. Amy was unusually cranky and would not stop crying. As we were leaving, I called the exchange at the doctor’s office. They told me to get her checked out at the local hospital before we went home.
    Amy ended up being admitted to the children’s hospital in Orange County and had surgery the next day. Her graph did not hold and she had the hernia again. I spent the next ten days in Orange County until she was released from the hospital. My husband wanted me to come home and work, I told him that I was not going home. I was not leaving a child of mine, of any age, alone in a hospital. I did not care if I lost my job, which my bosses were very understanding, and I did not lose my job. I did meet a parent at the hospital that did lose her job because of her infant’s medical problems.
    The first year of Amy’s life was hard. We were in the doctor’s office quite often. Any cold she would get would land us right back in the office. She did not like men to look at her, she would cry if any man looked at her. She would not laugh when you tickled her and she did not smile much. Once Amy turned a year old, she would laugh, let people look at her, and did not get sick as much. One friend said that Amy probably did not feel well that first year and was not able to tell us.
    The doctors had told us to make her into a book worm and that she would never do sports. I encouraged her to be active and let her play sports. The only sport that I would not let her do was to run cross country. I knew that her body would not have tolerated the type of endurance that was needed.
    Amy has grown up to be a healthy and active person. Sometimes I wonder what she would have been like if I would have listened to the doctors.

    A Father’s…

    28 years of life experience and 12 years of school, never prepared me for the news that my new born daughter was born with a diaphragmatic hernia. She would need to be put on a respirator to keep her alive. and she would need immediate surgery to repair the hole in her diaphragm. We were told she would have a 50/50 chance of surviving. This is what my wife and I had to deal with just moments after our daughter was born.
    I left my wife at the hospital, where our daughter was born, to recover from giving birth and followed the ambulance to Valley Children’s Hospital where she was to have surgery 4 hours after being born. It was difficult to sit there in the waiting room wondering if she would be ok and it was also difficult worrying about my wife being at a different hospital by herself, who was also worried about the condition of our daughter. Then the doctor came out to the waiting room and informed me that the surgery went well but she would need to stay in the hospital for several weeks until she stabilized and able breathe on her own. We were told that she would not be an athletic child and that she would be more of a book child.
    21 years later, I am proud to say that Amy is doing well she played recreational and completive soccer; where she played in the offense and defense positions as well as a goalie. She also referees and coaches soccer. She is working and putting herself through college to study to become a nurse. She is well on her way to fulfilling her dreams and having a successful life.
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