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01-23-2007, 02:28 AM
[left:93bc3ec872]http://www.cherubs-cdh.org/Album/new/haas-cameronandamy2.jpg[/left:93bc3ec872]My name is Denise. My daughter Aimee just turned sixteen years old this past April. The day after Mother's Day this year, she started to complain of severe abdominal pain. We took her to the doctors, who became suspicious when they heard no bowel sounds and didn't hear her breathing on the left side.
They ran many tests that night, the most important a chest x-ray, where they could see only about 30% of her left lung. They ordered a CT Scan and that’s when they saw that her large and small intestines, her bowels, and her spleen were in her left chest cavity under her lung.
The following morning a surgeon, Dr. Katlic, looked over her tests and rushed her into surgery. He was worried about blood supply being cut off to her organs. After two hours in surgery, Dr. Katlic came out and said she had done wonderfully. He made only one incision from her diaphragm bone to her belly button. He said all her organs were fine and were back in her abdomen. He did say there was barely enough room in there for them to fit. Until this point we had been under the impression that this was caused by a trauma, but we didn't have a trauma. During surgery, Dr Katlic found out differently. Since her left lung never fully matured, he is certain that she was born this way.
She spent two and a half days in ICU, with wonderful care and another seven days in the hospital. She had a very hard time eating and drinking and lost 12 lbs. But she has been home now two weeks and is doing great-- eating, walking around, feeling fine. She had a chest x-ray two days ago. It looks as though her left lung has expanded a little more. Everyone seemed so amazed by her surgery, her recovery and we didn't know why until I read your site. I am so amazed that she lived this way for 16 years. I had never heard of CDH until a few weeks ago, and I can't believe how much worse this could have been.
Updated 2006:
Aimee's story continues today, 4 years later, Aimee is expecting her first child. At her 28 week ultrasound they find that her baby has LCDH. She starts to see specailists in Allentown, Pa. at the Lehigh Valley Hospital. We met with the NICU team and plan for her to give birth there. She goes into labor 1 week before her scheduled time, her Pediatric surgeon is on vacation. So they send her to Hershey Medical Center, Hershey, Pa. to deliver. The NICU team is there during delivery and they take Cameron immediately. I can hear them talking, saying, "his lungs sound good". They clean him up and give him to Aimee to hold. After a few minutes they take him to NICU for further tests. He becomes agitated and they have to vent him. By day 3 he is doing well enough for surgery. He does well in surgery and we find out that everything except his liver was in his left chest cavity. They were able to repair his hole without mesh or Gortex. He starts doing very well except for feeding. Finally after 2 1/2 weeks he is eating well enough to come home. Cameron is now 8 months old, and his last x-rays showed that his left lung was just a touch smaller than his right lung. He is doing fine, eats well, has grown so big.
Both Aimee and her son Cameron are doing fine, and except for their scars you would never know that either of them ever had anything wrong with them.
Written by Aimee's mom, Denise Haas (Pennsylvania)
2002, Updated 2006
They ran many tests that night, the most important a chest x-ray, where they could see only about 30% of her left lung. They ordered a CT Scan and that’s when they saw that her large and small intestines, her bowels, and her spleen were in her left chest cavity under her lung.
The following morning a surgeon, Dr. Katlic, looked over her tests and rushed her into surgery. He was worried about blood supply being cut off to her organs. After two hours in surgery, Dr. Katlic came out and said she had done wonderfully. He made only one incision from her diaphragm bone to her belly button. He said all her organs were fine and were back in her abdomen. He did say there was barely enough room in there for them to fit. Until this point we had been under the impression that this was caused by a trauma, but we didn't have a trauma. During surgery, Dr Katlic found out differently. Since her left lung never fully matured, he is certain that she was born this way.
She spent two and a half days in ICU, with wonderful care and another seven days in the hospital. She had a very hard time eating and drinking and lost 12 lbs. But she has been home now two weeks and is doing great-- eating, walking around, feeling fine. She had a chest x-ray two days ago. It looks as though her left lung has expanded a little more. Everyone seemed so amazed by her surgery, her recovery and we didn't know why until I read your site. I am so amazed that she lived this way for 16 years. I had never heard of CDH until a few weeks ago, and I can't believe how much worse this could have been.
Updated 2006:
Aimee's story continues today, 4 years later, Aimee is expecting her first child. At her 28 week ultrasound they find that her baby has LCDH. She starts to see specailists in Allentown, Pa. at the Lehigh Valley Hospital. We met with the NICU team and plan for her to give birth there. She goes into labor 1 week before her scheduled time, her Pediatric surgeon is on vacation. So they send her to Hershey Medical Center, Hershey, Pa. to deliver. The NICU team is there during delivery and they take Cameron immediately. I can hear them talking, saying, "his lungs sound good". They clean him up and give him to Aimee to hold. After a few minutes they take him to NICU for further tests. He becomes agitated and they have to vent him. By day 3 he is doing well enough for surgery. He does well in surgery and we find out that everything except his liver was in his left chest cavity. They were able to repair his hole without mesh or Gortex. He starts doing very well except for feeding. Finally after 2 1/2 weeks he is eating well enough to come home. Cameron is now 8 months old, and his last x-rays showed that his left lung was just a touch smaller than his right lung. He is doing fine, eats well, has grown so big.
Both Aimee and her son Cameron are doing fine, and except for their scars you would never know that either of them ever had anything wrong with them.
Written by Aimee's mom, Denise Haas (Pennsylvania)
2002, Updated 2006