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01-23-2007, 12:49 AM
[left:f245b583ab]http://www.cherubs-cdh.org/Album/new/kincade2.jpg[/left:f245b583ab]Our son Sam was born May 1st, 1997 with a left CDH, soft cleft palate, hypospadia, and a left femur fracture. My pregnancy had been textbook normal and after our "normal" amniocentesis and ultrasounds we felt excited and quite confident about the upcoming birth of our healthy baby boy. We decided to get out of town one last weekend before Sam was born and went to Pismo Beach for the weekend on April 26th. While we were out to dinner I sneezed and my bag of water ruptured. ON the advice of my great OB/GYN MD we made what seemed like a very long drive home to L.A. where he admitted me for premature rupture of my membranes and premature labor. At the time, I was 34 weeks pregnant.
This crisis was nothing however, compared to our shock several days later when Sam was born with his problems. He was immediately intubated and transferred to Huntington Memorial Hospital in Pasadena to their NICU for possible ECMO and nitric oxide treatment. Luckily Sam didn't have to have either of these, and since he was stable they repaired his left CDH at 5 days after he was born. He did very well with the surgery but remained intubated for 4 weeks because of his traction for his femur, continuing chest tube draining, and his very small left lung. A geneticist came to see us in NICU and ruled out any syndromes which we were grateful for, but she didn't have any answers as to why Sam was born with all these problems.
Without a doubt this was the most difficult thing my husband and I had ever been through in both of our lives. Sam is my first and only child--my husband had three children by a previous marriage, so we decided to only have one child together. Sam stayed in the NICU for 10 weeks and it was so hard to make it through that time. Even with me being a nurse, there were many days I felt either total fear over how Sam would ever survive all this and be normal, or despair over all he and we had been through. Several of the NICU staff were wonderful--giving us the information we so much needed to understand Sam's diagnoses and TLC when we had enough of all the tests, alarms, and noises of the NICU. I read a book when I had really had my fill of all the technical and medical side of things--Kitchen Table Wisdom by Dr. Rachel Remen. This book gave me some hope and helped me keep in touch with the more human side of medicine and life. More than anything though, we wouldn't have made it through this without the help and support of all our family and friends.
Sam came home on Wednesday, July 10th and since then has overall done pretty well. He has gastric reflux and because of this, the cleft palate and his small left lung feeding has been a challenge. They had to repair his CDH again in Oct. as the original patch ruptured and his colon had migrated up into his chest again. Luckily though, this time he was only in the hospital 4 days and did well with the surgery. At the same time as this surgery, they put in a G tube which we hated the idea of, but his feeding was going slow and he was starting to pull out his NG tubes frequently. We are very fortunate to have a wonderful, supportive feeding therapist who truly has been a godsend to us during all of this.
We were lucky that Sam never had to be on oxygen since was extubated and so far, knock on wood, he has not had any major colds or infections. He is gaining weight steadily and at six months weighs 16lbs 10oz-- a long way from his birth weight of 4lbs 12oz. The pulmonologist was reassuring in feeling that Sam's left lung would grow given time and no major respiratory infections.
All along we have been very concerned how Sam would fair with so many health problems. Perhaps one of our best days was recently when we had Sam evaluated by a developmental specialist who encouraged us that Sam would be fine after receiving more feeding therapy and some developmental therapy. At six months, he is developmentally delayed to about 4 and a half months. Much to our amazement, despite all he has been through, Sam is a very happy baby-- smiles a lot, laughs, razzes and gurbles and seems to just roll with the punches.
We are hopeful for the future and glad to finally be leaving so many fears and medical concerns behind and just enjoy Sam. I am sure that every parent who has had a child born with problems has gone through many of these same emotions my husband, our family, friends, and I have. I don't believe God caused this to happen. No one deserves a situation like this-- not Sam, not my husband, or myself. What I do know is that now, more than ever before my heart goes out to those parents who have had to deal with things like this. This experience certainly has brought home to me that there are no guarantees in life and that being compassionate and caring help fill in the void where the medical facts and cold realities leave off. I wish I had a magic wand to wipe away not only CDHs, but all birth defects and disabilities. Obviously I don't, so I wish everyone to have as much support and love as we have had to find their own way through the hard times and not lose their own hearts and compassion in the process.
We thank Dawn very much for CHERUBS. This was the first and most comprehensive information we could get on CDHs. We only wish we gotten this information while Sam was in NICU. We also found it very helpful to read other families experiences. We are happy to correspond with any families and as of now, have already met a few people through CHERUBS
We wish our best to all!
Witten by Sam's mom, Candace Kincade (Califonria)
1998
This crisis was nothing however, compared to our shock several days later when Sam was born with his problems. He was immediately intubated and transferred to Huntington Memorial Hospital in Pasadena to their NICU for possible ECMO and nitric oxide treatment. Luckily Sam didn't have to have either of these, and since he was stable they repaired his left CDH at 5 days after he was born. He did very well with the surgery but remained intubated for 4 weeks because of his traction for his femur, continuing chest tube draining, and his very small left lung. A geneticist came to see us in NICU and ruled out any syndromes which we were grateful for, but she didn't have any answers as to why Sam was born with all these problems.
Without a doubt this was the most difficult thing my husband and I had ever been through in both of our lives. Sam is my first and only child--my husband had three children by a previous marriage, so we decided to only have one child together. Sam stayed in the NICU for 10 weeks and it was so hard to make it through that time. Even with me being a nurse, there were many days I felt either total fear over how Sam would ever survive all this and be normal, or despair over all he and we had been through. Several of the NICU staff were wonderful--giving us the information we so much needed to understand Sam's diagnoses and TLC when we had enough of all the tests, alarms, and noises of the NICU. I read a book when I had really had my fill of all the technical and medical side of things--Kitchen Table Wisdom by Dr. Rachel Remen. This book gave me some hope and helped me keep in touch with the more human side of medicine and life. More than anything though, we wouldn't have made it through this without the help and support of all our family and friends.
Sam came home on Wednesday, July 10th and since then has overall done pretty well. He has gastric reflux and because of this, the cleft palate and his small left lung feeding has been a challenge. They had to repair his CDH again in Oct. as the original patch ruptured and his colon had migrated up into his chest again. Luckily though, this time he was only in the hospital 4 days and did well with the surgery. At the same time as this surgery, they put in a G tube which we hated the idea of, but his feeding was going slow and he was starting to pull out his NG tubes frequently. We are very fortunate to have a wonderful, supportive feeding therapist who truly has been a godsend to us during all of this.
We were lucky that Sam never had to be on oxygen since was extubated and so far, knock on wood, he has not had any major colds or infections. He is gaining weight steadily and at six months weighs 16lbs 10oz-- a long way from his birth weight of 4lbs 12oz. The pulmonologist was reassuring in feeling that Sam's left lung would grow given time and no major respiratory infections.
All along we have been very concerned how Sam would fair with so many health problems. Perhaps one of our best days was recently when we had Sam evaluated by a developmental specialist who encouraged us that Sam would be fine after receiving more feeding therapy and some developmental therapy. At six months, he is developmentally delayed to about 4 and a half months. Much to our amazement, despite all he has been through, Sam is a very happy baby-- smiles a lot, laughs, razzes and gurbles and seems to just roll with the punches.
We are hopeful for the future and glad to finally be leaving so many fears and medical concerns behind and just enjoy Sam. I am sure that every parent who has had a child born with problems has gone through many of these same emotions my husband, our family, friends, and I have. I don't believe God caused this to happen. No one deserves a situation like this-- not Sam, not my husband, or myself. What I do know is that now, more than ever before my heart goes out to those parents who have had to deal with things like this. This experience certainly has brought home to me that there are no guarantees in life and that being compassionate and caring help fill in the void where the medical facts and cold realities leave off. I wish I had a magic wand to wipe away not only CDHs, but all birth defects and disabilities. Obviously I don't, so I wish everyone to have as much support and love as we have had to find their own way through the hard times and not lose their own hearts and compassion in the process.
We thank Dawn very much for CHERUBS. This was the first and most comprehensive information we could get on CDHs. We only wish we gotten this information while Sam was in NICU. We also found it very helpful to read other families experiences. We are happy to correspond with any families and as of now, have already met a few people through CHERUBS
We wish our best to all!
Witten by Sam's mom, Candace Kincade (Califonria)
1998