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Thread: CDH from three perspectives

  1. #1

    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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  2. #2
    ((Continues)) And a Survivor’s.

    My name is Amy Schlueter. I was born August 4,1991 with LCDH. I was transported to Valley Children’s Hospital where I had the hernia repaired four hours after birth. Two months later, I had a re-herniation, which was repaired at Children’s Hospital Orange County. Today I am a 21 year old studying to be a Nurse.
    Growing up, I played any and every sport I could sign up for. I have always loved being active and competitive. The only problem I seemed to have was that I could not keep up with the rest of my peers. Whether this be running during soccer and track practice or completing “The Big Mama” in elementary school. (This turned out to be a fun code the school made up for a mile.) I would start out completely fine, ahead of the pace of many of the others when suddenly, my chest would feel tight, breathing would become extremely difficult, and what I described as my “heart hurting” would begin. After the “attack” ended, I would quickly explain to everyone around that I only had one working lung. While I know that the breathing issues stem from the underdeveloped lung, I have never been able to receive a diagnosis to explain my random chest pains that occur during exercise and randomly during regular activity.
    Ever since I could remember, I was embarrassed that I could not run as far or do as much as everyone else. Even today, I become frustrated and embarrassed. I find it unfair that I work out/run several times a week, and yet I still seem out of shape to those who see me struggling to breath. Even as an adult I have worked myself into such an extreme “attack” that I have passed out because I was too proud to slow down during my competitive soccer team’s practice. This, ironically, turns out to be more embarrassing than just admitting I couldn’t run as far as everyone else.
    My greatest love has always been soccer. When I was young, I did not know how to read the signs of when an “attack” would come on. In practically every game, it seemed, I would have to be carried off the field by my coach because I could not breathe. I remember all the parents being so concerned about me and then my mother or father would come up to me and say, “you are ok, calm down, and get back out there!” One of my proudest moments, was when I was around 18 and I was able to play a whole soccer game without being subbed. A small accomplishment to many, but enormous for me.
    Despite the doctor’s precautions, my parents never held me back. (That is besides track, they were just being realistic with that one.) Because they never held me back, despite my breathing deficiency, I had to learn how to not only prevent the “attacks”, I had to teach myself how to catch my breath after one. When I was a child and had temper tantrums, I remember crying so hard that it would turn into one of those “attacks”. Zero sympathy came from my parents however. They would let me settle myself down, get control of my breathing and then ask me, “Now was that worth it?”
    Being born with CDH was never an excuse not to try. In fact, my parents never told me about the seriousness of this condition because they did not want me to ever use it as an excuse. During a college Anatomy course, I had a research paper due. This paper could be on anything having to do with human anatomy. Up until that paper, I had written every other anatomy based paper on Leukemia. I decided to research CDH and see if there was enough information to write a paper on it.
    Before that day, I had always assumed that I was one of just a few this may have affected. The procedure seemed simple to me; a baby was born with a hole in the diaphragm and all the doctor would have to do is move the organs back, patch up the hole, and he/she was good to go. You can imagine my surprise when I found out the truth. It was as if I had discovered a whole new world. I was on the computer for hours that night absorbing as much new information as I could.
    After my discovery of the CHERUBS, I felt it was my responsibility as a survivor to raise as much awareness as possible. I have vowed to never take my health for granted again. I am one of the few who has been able to grow up with very minimal health complications. I have now seen what many other families have to go through. 50% of these babies will not survive. While a portion of those who do survive, have to fight for life almost every day. My father recently told me, after I excitedly explained my future plans on awareness and fundraising, “This is exactly why you were spared; this is God’s purpose for you.” I have always known that I wanted to be a Nurse, I now hope to be able to work specifically with those effected by CDH.

  3. #3
    What an engrossing story. It is filled with hope through the bad times. Thank you, all three of you, for sharing this with us. Amy, you are a STAR - just as your parents are too!

  4. #4
    10;25 am here in th UK X what a wonderful story well done Amy , much love & thankyou to your parents too . I am mummy to Charley . LCDH she is almost 3 . We havent had an uneventful year yet medical wise x im praying 2013 is a better one x You inspirational story will indeed lift many parents up x

  5. #5
    Thank You SO MUCH for relaying your story!!! You & your family are an inspiration to all!!
    Shelly Moore
    CHERUBS Oregon Representative and Oregon Hospital Angel
    CHERUBS Prayer Committee Member
    CHERUBS Parental Advisory Board Member (2013-2015)

    Grandmother to cherub angel Jayden, the only son to my born to youngest daughter, Alicia.

    Jayden was diagnosed with CDH at his 17 week ultrasound with severe LCDH, stomach, intestines up as well as having polycystic kidneys. He was born February 19, 2010 at 36 weeks gestation.

    Jayden spent 7 days on ECMO after which he was working on gaining strength for surgery when his polycystic kidneys started failing at about day 15, totally failing by day 19.

    Jayden spent 4 days on dialysis before gaining his wings on March 14, 2010 at age 23 days.

    Remembering Jayden - A Family's Journey in Coping with Loss to CDH

    Jayden's CDH Story 2/19/10 - 3/14/10

  6. #6
    Amy, what a journey you have been on. Thank you so much for sharing all 3 perspectives, your parents sound like caring and wonderful parents. You are a strong woman and I love that you go after your dreams. Your story will give others hope! Look forward to you joining our volunteer team here at CHERUBS!!!
    Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.

  7. #7
    I LOVED reading all the stories. What a great idea so share from each of you. Thank you so much. Way to never ever give up Amy. Your story is one many other kids with CDH should read.
    Mom to Kylee Freedom Green. 10/04/00 - 10/05/00. 3lbs 14 ozs. Born at 35 weeks via emergency cesarean due to massive polyhydramnios that was restricting Kylee’s growth. She had LSCDH Her stomach, chest, and small portions of her liver, had breached into the upper-chest. Kylee had other congenital anomalies including: multiple heart-defects, two-vessel cord, Trisomy-18, as well as an AV canal defect. After much research, we chose to deliver at St. Luke’s Episcopal Hospital in Houston, TX . As soon as they delivered her she was immediately transferred to the NICU/Neo-Natal team right at the adjoining Texas Children’s Hospital. Also mom to Trey ( 9 ), Skyla ( , Chloe ( 6 ) & Elodie ( 3 )

  8. #8
    Hi Amy! This is the first story I read and I am very happy about it! I feel a sort of connection and this is both strange and beautiful. I was born in Bologna in july 11 1991 with left cdh and malrotation. I had 2 operations and grew up like a normal person, with no handicaps or abnormalities, as you say, thanks to my parents first of all. Now i study medicine! I am very curious about your perception of cdh and if you ever feel your daily life, in terms of character, fears, relationships, can be influenced by the past trauma. I find myself focusing a lot on my medical story, asking me if my monsters could be linked with this, and how.
    My best wishes , Giulia

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