Dear Mr. Sparks,
My name is Jenni Forman and my husband Robert, and I recently had a baby with CDH. I had a very normal pregnancy up until 32 weeks. I went to see my OB/GYN for a routine visit. Dr. Settle was worried because I weighed and measured the same as I had at 27 weeks. He decided to see me a week later to see if I had gained any more weight or measured any bigger. A week came and still I was the same as I was at 27 weeks. I had an ultrasound at 27 weeks that was normal except for her cleft lip. Dr. Settle decided to send me to the hospital for another ultrasound to check fetal growth. The x-ray technician took a bunch of pictures and told me they would have the results on Friday. I felt like something wasn’t right. I called Dr. Settle on Friday and he never called me back until Monday morning. He told me that the baby had a hole in her diaphragm. He said that he wanted to send me to University hospital in Oklahoma City (about 300 miles away) to a high risk OB/GYN. On Tuesday January 11th I saw Dr. Coleman in OKC. He did another ultrasound and confirmed the CDH and cleft lip. He said the baby could possibly have Trisomy 13. He did not want to do an amniocentesis because of the risk of premature labor or infection this late in the pregnancy. He gave us an 80% chance she would die and a 20% chance she would live. He sent me back home and said to come back for a check up on February 17th. He never offered to let us talk to the baby’s doctor or tour the NICU at Children’s Hospital. He never explained ECMO or anything about the treatment of CDH. We went home in shock. We stayed that way for about 3 weeks until we saw the program about the baby with CDH on 20/20. After seeing that, we started doing research on the internet and that is how we found CHERUBS. When we returned to Dr. Coleman on February 17th, we had a lot of questions. He answered most of them, but was still very negative about the outcome. He told us we would do a c-section February 24th. We went back home. We were very angry about the negativity so we called his partner Dr. Stanley. He called us back and answered all our questions. He had one of the neonatologists call us to explain what we could expect from them. Dr. Mantor told us that they would not allow the baby to cry or anything. He said she would be intubated immediately and taken across the street to Children’s Hospital of Oklahoma. Dr. Mantor then contacted Dr. Coleman and Dr. Stanley and they decided to do my c-section on February 22nd. We arrived in OKC at University Hospital at 9:00am on the 22nd. At 12:10pm, February 22nd 2000, Candis Nakole Forman was born 11 days early weighing 4lbs 7oz and was 18 ¼ long. She was intubated and taken to x-ray. After her x-rays were done they brought her by so I could see her before she went to Children’s Hospital. About 3 hours after she was born the neonatologist came and told us that she had a heart problem that could not be fixed and that she would be lucky if she made it through the night. My husband and parents went to see her several times during the day. Around 9:00 that night I was finally able to go see her. When we got over to Children’s Hospital she was dropping very fast. When I talked to her, her vital signs went up for about 25 minutes. We had her baptized and she passed away in her daddy’s arms at 9:30pm. We got to hold her and tell her how much we loved her. We told her that it was ok to go home. We found out a couple of days later that she did have Trisomy-13. We will always love her and miss her, but she is in a much better place now. She will never feel pain or sickness the way we do. We know that we will all be together again.
Sincerely,
Candis's family, Jenni, Robert, and Brenton Forman (Oklahoma)
My name is Jenni Forman and my husband Robert, and I recently had a baby with CDH. I had a very normal pregnancy up until 32 weeks. I went to see my OB/GYN for a routine visit. Dr. Settle was worried because I weighed and measured the same as I had at 27 weeks. He decided to see me a week later to see if I had gained any more weight or measured any bigger. A week came and still I was the same as I was at 27 weeks. I had an ultrasound at 27 weeks that was normal except for her cleft lip. Dr. Settle decided to send me to the hospital for another ultrasound to check fetal growth. The x-ray technician took a bunch of pictures and told me they would have the results on Friday. I felt like something wasn’t right. I called Dr. Settle on Friday and he never called me back until Monday morning. He told me that the baby had a hole in her diaphragm. He said that he wanted to send me to University hospital in Oklahoma City (about 300 miles away) to a high risk OB/GYN. On Tuesday January 11th I saw Dr. Coleman in OKC. He did another ultrasound and confirmed the CDH and cleft lip. He said the baby could possibly have Trisomy 13. He did not want to do an amniocentesis because of the risk of premature labor or infection this late in the pregnancy. He gave us an 80% chance she would die and a 20% chance she would live. He sent me back home and said to come back for a check up on February 17th. He never offered to let us talk to the baby’s doctor or tour the NICU at Children’s Hospital. He never explained ECMO or anything about the treatment of CDH. We went home in shock. We stayed that way for about 3 weeks until we saw the program about the baby with CDH on 20/20. After seeing that, we started doing research on the internet and that is how we found CHERUBS. When we returned to Dr. Coleman on February 17th, we had a lot of questions. He answered most of them, but was still very negative about the outcome. He told us we would do a c-section February 24th. We went back home. We were very angry about the negativity so we called his partner Dr. Stanley. He called us back and answered all our questions. He had one of the neonatologists call us to explain what we could expect from them. Dr. Mantor told us that they would not allow the baby to cry or anything. He said she would be intubated immediately and taken across the street to Children’s Hospital of Oklahoma. Dr. Mantor then contacted Dr. Coleman and Dr. Stanley and they decided to do my c-section on February 22nd. We arrived in OKC at University Hospital at 9:00am on the 22nd. At 12:10pm, February 22nd 2000, Candis Nakole Forman was born 11 days early weighing 4lbs 7oz and was 18 ¼ long. She was intubated and taken to x-ray. After her x-rays were done they brought her by so I could see her before she went to Children’s Hospital. About 3 hours after she was born the neonatologist came and told us that she had a heart problem that could not be fixed and that she would be lucky if she made it through the night. My husband and parents went to see her several times during the day. Around 9:00 that night I was finally able to go see her. When we got over to Children’s Hospital she was dropping very fast. When I talked to her, her vital signs went up for about 25 minutes. We had her baptized and she passed away in her daddy’s arms at 9:30pm. We got to hold her and tell her how much we loved her. We told her that it was ok to go home. We found out a couple of days later that she did have Trisomy-13. We will always love her and miss her, but she is in a much better place now. She will never feel pain or sickness the way we do. We know that we will all be together again.
Sincerely,
Candis's family, Jenni, Robert, and Brenton Forman (Oklahoma)
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