Dear Mr. Sparks,
I'm not quite sure where to begin. It's now been a little over 3 months since we lost our son to CDH. It's taken me a while to come to some sort of terms with our loss in order to be ready to tell our story. I feel that it's important to tell our story not only to help us heal and to remember our beautiful baby boy but, also to help anyone out there who might be going through what we went through. I know that after our son was diagnosed with CDH, I spent hours daily on this site and it really helped me!
I was 23 weeks pregnant when I went in for my 2nd trimester sonogram. As the technician did the sonogram, I knew something was WRONG! She evaded my questions and was very reluctant to give me a picture of the baby. The worst part was that I had taken our 6-year-old daughter with me. She was so excited about finally having a brother or sister. We were hoping to find out the sex of the baby. That, too, was not told to us. I was simply told that my doctor would be contacting me to go over the results. I had the sonogram on a Friday afternoon so, needless to say my doctor had already gone home and wasn't able to tell me anything that day. I went home and worried the whole weekend-knowing in the back of my mind something was wrong. On Monday morning, I called my doctor during my break from work and my worst fears were realized. She informed me that the sonogram showed a great deal of fluid in the baby's abdomen. I asked what this meant and she said she wasn't sure but, would like me to go for a more intense sonogram. I called immediately and tried to schedule an appointment-they tried to tell me that I was going to have to wait for nearly a week-I told them there was NO WAY that I was going to wait a week after hearing this news-so they finally scheduled me the following day. That night I went home and searched all over the internet for these symptoms to see what it could possibly be but, found nothing. I backtracked through my pregnancy a million times to find things that went wrong. In my first trimester, I spotted a couple of times but, it was dismissed by my doctor as nothing major. The pregnancy appeared fine. The second trimester I gained weight very rapidly despite eating right and exercising-I gained very little weight with my daughter. My doctor insisted that I was merely eating too much even though I told her I was NOT.
The next day came and my husband and I went together. We were taken into a room and within minutes the technician had the doctor in the room. He showed us all of the fluid and explained that our baby had CDH and it was very serious. He said another doctor was going to talk with us and explain what this meant and what our options were. We were taken to another room where we sat a while and cried until the doctor came in she explained that our son had CDH and it was very serious. He had liver in his chest area and he was under cardiac arrest from his liver pushing on his heart. She said that I had polyhydramnios with very large amounts of amniotic fluid. She felt that the fluid was going to put me into an early labor and the baby would die at birth or else the baby was going to die in the womb. She did also say that there were some doctors in San Francisco doing experimental surgery and some doctors at Children's Hospital that could tell me more about CDH and the chances for our baby. She felt they were slim to none. We were offered a late termination that would have to be done in the next 3 days-as I was in the last week possible. I don't know how I remember any of what she told us because I was in such a state of shock! We left there having decided we could not take the chance with my life and we did not feel we had the strength to bear watching our son die-we were going to L.A. to terminate.
The next 3 days were grueling. I cried continuously, threw up constantly, and prayed God would take my son naturally and not force me to make this decision. I took it upon myself to go to Children's hospital and find a doctor who dealt with babies with CDH. She was such an amazing person. Without ever knowing me-she left what she was doing and talked for nearly an hour to me-she told me of all of the wonderful things that they can do to help these babies-but, she also told me that my case seemed to be very severe-she even cried with me. She even went as far as to give me her home and office number to talk further if I wished. She truly was an angel of mercy. The day came, we went to L.A. with my sister at our side. We went into the clinic and I broke down and lost complete control. There was no way I could abort a baby that I wanted so badly and had PLANNED to have. I loved my baby! We left and I thank God every single day of my life for walking me out of that clinic.
The remainder of the pregnancy was very difficult but, I would never reverse my decision to continue the pregnancy! We had so much love and support from our families, friends, and colleagues. My polyhydramnios got far worse! My care was taken over by specialists. The specialists gave us very little hope but, for the same token would not tell us that there was no hope either. They did nothing to help me with the horrible discomfort from the polyhydramnios-I had gained 60 pounds. The weight was coming on at about 8-10 pounds a week. My legs were so swollen that I could not bend my ankles or knees. I could not sleep-I cried it hurt so bad. I went into the triage dept. at the hospital a couple of times but, my doctor did nothing-saying that if she drained the fluid it would just prolong the pregnancy and inducing me was illegal. We were so frustrated! We decided that we wanted a second opinion! I knew my rights with the insurance company and insisted on a second opinion. It took a while but, we were finally scheduled for a second opinion in my 29th week.
It only took this wonderful doctor a matter of minutes to tell us that both my condition and the baby's had become very severe. He asked if he could be blunt and then told us that our son had no chance of surviving. He also told us that he was far too large to deliver naturally. His abdomen had become so swollen he was off of the charts and this was only my 29th week. He told us how severe my polyhydramnios was. We immediately signed our care over to him that day. He drained some of my fluid and scheduled me for a c-section 2 days later.
With our families at our side every step of the way, we went into the operating room-my husband holding my hand the entire time. The operation was difficult because of the size of our son. The staff was so understanding and compassionate. They delivered our son and pre-warned us about the severity of his appearance. The nurses held and cuddled him as they would any other baby. One nurse even asked if she could bless him. They showed us our son. We named him Joshua-meaning saved by God. Although he did not live-we feel that he is alive with God and is therefore, saved. After the surgery, a couple of wonderful nurses brought us our son to touch and hold him. We didn't think that we had the strength for this but, it turned out to be the one thing that I am most thankful for. It did not matter to me what Joshua looked like-he was so beautiful to us. He was our son and we loved him and will always love him! Although he never breathed-he had a slight heart beat for about an hour-it stopped right after they took him away from us. I think that he was holding on to meet us. The nurses made a memory box for us that is my most treasured possession. I look at Joshua's pictures daily and still cry often but, I know that he is with God and my mother in heaven and is in no more pain.
Written by Joshua's mom, Teresa Kelly (California)
I'm not quite sure where to begin. It's now been a little over 3 months since we lost our son to CDH. It's taken me a while to come to some sort of terms with our loss in order to be ready to tell our story. I feel that it's important to tell our story not only to help us heal and to remember our beautiful baby boy but, also to help anyone out there who might be going through what we went through. I know that after our son was diagnosed with CDH, I spent hours daily on this site and it really helped me!
I was 23 weeks pregnant when I went in for my 2nd trimester sonogram. As the technician did the sonogram, I knew something was WRONG! She evaded my questions and was very reluctant to give me a picture of the baby. The worst part was that I had taken our 6-year-old daughter with me. She was so excited about finally having a brother or sister. We were hoping to find out the sex of the baby. That, too, was not told to us. I was simply told that my doctor would be contacting me to go over the results. I had the sonogram on a Friday afternoon so, needless to say my doctor had already gone home and wasn't able to tell me anything that day. I went home and worried the whole weekend-knowing in the back of my mind something was wrong. On Monday morning, I called my doctor during my break from work and my worst fears were realized. She informed me that the sonogram showed a great deal of fluid in the baby's abdomen. I asked what this meant and she said she wasn't sure but, would like me to go for a more intense sonogram. I called immediately and tried to schedule an appointment-they tried to tell me that I was going to have to wait for nearly a week-I told them there was NO WAY that I was going to wait a week after hearing this news-so they finally scheduled me the following day. That night I went home and searched all over the internet for these symptoms to see what it could possibly be but, found nothing. I backtracked through my pregnancy a million times to find things that went wrong. In my first trimester, I spotted a couple of times but, it was dismissed by my doctor as nothing major. The pregnancy appeared fine. The second trimester I gained weight very rapidly despite eating right and exercising-I gained very little weight with my daughter. My doctor insisted that I was merely eating too much even though I told her I was NOT.
The next day came and my husband and I went together. We were taken into a room and within minutes the technician had the doctor in the room. He showed us all of the fluid and explained that our baby had CDH and it was very serious. He said another doctor was going to talk with us and explain what this meant and what our options were. We were taken to another room where we sat a while and cried until the doctor came in she explained that our son had CDH and it was very serious. He had liver in his chest area and he was under cardiac arrest from his liver pushing on his heart. She said that I had polyhydramnios with very large amounts of amniotic fluid. She felt that the fluid was going to put me into an early labor and the baby would die at birth or else the baby was going to die in the womb. She did also say that there were some doctors in San Francisco doing experimental surgery and some doctors at Children's Hospital that could tell me more about CDH and the chances for our baby. She felt they were slim to none. We were offered a late termination that would have to be done in the next 3 days-as I was in the last week possible. I don't know how I remember any of what she told us because I was in such a state of shock! We left there having decided we could not take the chance with my life and we did not feel we had the strength to bear watching our son die-we were going to L.A. to terminate.
The next 3 days were grueling. I cried continuously, threw up constantly, and prayed God would take my son naturally and not force me to make this decision. I took it upon myself to go to Children's hospital and find a doctor who dealt with babies with CDH. She was such an amazing person. Without ever knowing me-she left what she was doing and talked for nearly an hour to me-she told me of all of the wonderful things that they can do to help these babies-but, she also told me that my case seemed to be very severe-she even cried with me. She even went as far as to give me her home and office number to talk further if I wished. She truly was an angel of mercy. The day came, we went to L.A. with my sister at our side. We went into the clinic and I broke down and lost complete control. There was no way I could abort a baby that I wanted so badly and had PLANNED to have. I loved my baby! We left and I thank God every single day of my life for walking me out of that clinic.
The remainder of the pregnancy was very difficult but, I would never reverse my decision to continue the pregnancy! We had so much love and support from our families, friends, and colleagues. My polyhydramnios got far worse! My care was taken over by specialists. The specialists gave us very little hope but, for the same token would not tell us that there was no hope either. They did nothing to help me with the horrible discomfort from the polyhydramnios-I had gained 60 pounds. The weight was coming on at about 8-10 pounds a week. My legs were so swollen that I could not bend my ankles or knees. I could not sleep-I cried it hurt so bad. I went into the triage dept. at the hospital a couple of times but, my doctor did nothing-saying that if she drained the fluid it would just prolong the pregnancy and inducing me was illegal. We were so frustrated! We decided that we wanted a second opinion! I knew my rights with the insurance company and insisted on a second opinion. It took a while but, we were finally scheduled for a second opinion in my 29th week.
It only took this wonderful doctor a matter of minutes to tell us that both my condition and the baby's had become very severe. He asked if he could be blunt and then told us that our son had no chance of surviving. He also told us that he was far too large to deliver naturally. His abdomen had become so swollen he was off of the charts and this was only my 29th week. He told us how severe my polyhydramnios was. We immediately signed our care over to him that day. He drained some of my fluid and scheduled me for a c-section 2 days later.
With our families at our side every step of the way, we went into the operating room-my husband holding my hand the entire time. The operation was difficult because of the size of our son. The staff was so understanding and compassionate. They delivered our son and pre-warned us about the severity of his appearance. The nurses held and cuddled him as they would any other baby. One nurse even asked if she could bless him. They showed us our son. We named him Joshua-meaning saved by God. Although he did not live-we feel that he is alive with God and is therefore, saved. After the surgery, a couple of wonderful nurses brought us our son to touch and hold him. We didn't think that we had the strength for this but, it turned out to be the one thing that I am most thankful for. It did not matter to me what Joshua looked like-he was so beautiful to us. He was our son and we loved him and will always love him! Although he never breathed-he had a slight heart beat for about an hour-it stopped right after they took him away from us. I think that he was holding on to meet us. The nurses made a memory box for us that is my most treasured possession. I look at Joshua's pictures daily and still cry often but, I know that he is with God and my mother in heaven and is in no more pain.
Written by Joshua's mom, Teresa Kelly (California)
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