Hello and Welcome to "Raising Diaphragmatic Hernia Children.".
Miracles happen and our children are living proof. You got through the long pregnancy. You got through the difficult NICU struggles, now what lies ahead for your child? I intend to go through each and every issue cdh children can have in order to give you knowledge. In my opinion knowledge is more than power. It is my everything.
I don't hold all the answers. I can give you my research and my understandings. I am not a doctor or a nurse. I am just a Mother of a cdh child that cares deeply. I fought through this beast of a birth defect with my family. It took a hold of us and shook us to the core. We grew together closer than we could have ever imagined. I feel it is my job to educate and grow wiser so to always keep up to date with the latest information on congenital diaphragmatic hernias.
If I can help one person ease this journey or bring light to an arising problem then I have done my job. One thing I've learned is that you MUST listen to your heart. A gut feeling is what kept my Ava alive.
You are not alone. You are not the only parent to walk this road. Diaphragmatic hernia was life changing when it happened but after you adjust and it becomes your new normal. We can get through this together!
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After the birth of your congenital diaphragmatic hernia baby you will find your new "Normal" in life.
Questions you may ask yourself or your child's doctor.
(This will depend a lot on how severe their cdh was at birth.)
What to expect from my CDH child?
All CDH children are different, no two are the same. Your child will be stronger than you can ever imagine. Try to encourage them to keep fighting! Hold onto Hope! Be strong for your child. They need you!
Will they be like other kids?
Often cdh children start out a little slower meaning they may not follow the typical development curve of a "normal" child. Their long hospitalization and surgery play a role in how quickly they bounce back. Here is a list of things congenital diaphragmatic hernia children can possible face. Not all children have all of these issues. Some kids turn around and become perfectly healthy, normal children after their repair surgery..
http://cdhkids.blogspot.com/p/common-cdh-issues.html
What signs and symptoms indicate problems?
Be sure to keep your eyes and mind open to issues your child may be having. Things to look out for at anytime...
Not able to suck properly could mean feeding difficulties.
No bowel movement could mean possible bowel obstruction.
Coughing and wheezing could mean asthma or chronic lung disease.
Your child is not learning new things could mean developmental delays.
Feedings coming back up could mean Gerd, Reflux or Gatroparesis.
No weight gain could mean failure to thrive or oral adversion.
Not hearing well could mean a hearing loss.
Spine curving could mean scoliosis or musculoskeletal deformities.
Low oxygen levels could mean need for oxygen.
Seizures could mean neurological problems.
Becoming very sick, not acting themselves, not hungry, difficult breathing, fever or green bile could mean enventration of the diaphragm or reherniation of the diaphragm. For a full list of signs and symptoms see this link.
http://cdhkids.blogspot.com/p/signs-of-reherniation.html
How can I protect them?
You can protect them by keeping them away from large crowds for the first 12 months if possible. Always wash your hands and use good sanitary measures.
Am I worrying too much?
You will almost always worry. This is all part of being a good parent. It is important to know the signs of trouble and keep them in the front of your mind at all times. Do try and relax and enjoy your child... after all they are just that "your child".
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This site offers parents ways to be aware of problems their child may face. There is no two cdh children alike. However many have the same issues.
We also have a page on facebook called, "Raising Healthy Diaphragmatic Hernia Children" for instant questions and answers from other CDH parents. Feel free to check us out.
Miracles happen and our children are living proof. You got through the long pregnancy. You got through the difficult NICU struggles, now what lies ahead for your child? I intend to go through each and every issue cdh children can have in order to give you knowledge. In my opinion knowledge is more than power. It is my everything.
I don't hold all the answers. I can give you my research and my understandings. I am not a doctor or a nurse. I am just a Mother of a cdh child that cares deeply. I fought through this beast of a birth defect with my family. It took a hold of us and shook us to the core. We grew together closer than we could have ever imagined. I feel it is my job to educate and grow wiser so to always keep up to date with the latest information on congenital diaphragmatic hernias.
If I can help one person ease this journey or bring light to an arising problem then I have done my job. One thing I've learned is that you MUST listen to your heart. A gut feeling is what kept my Ava alive.
You are not alone. You are not the only parent to walk this road. Diaphragmatic hernia was life changing when it happened but after you adjust and it becomes your new normal. We can get through this together!
--------------------------------------------------------------
After the birth of your congenital diaphragmatic hernia baby you will find your new "Normal" in life.
Questions you may ask yourself or your child's doctor.
(This will depend a lot on how severe their cdh was at birth.)
What to expect from my CDH child?
All CDH children are different, no two are the same. Your child will be stronger than you can ever imagine. Try to encourage them to keep fighting! Hold onto Hope! Be strong for your child. They need you!
Will they be like other kids?
Often cdh children start out a little slower meaning they may not follow the typical development curve of a "normal" child. Their long hospitalization and surgery play a role in how quickly they bounce back. Here is a list of things congenital diaphragmatic hernia children can possible face. Not all children have all of these issues. Some kids turn around and become perfectly healthy, normal children after their repair surgery..
http://cdhkids.blogspot.com/p/common-cdh-issues.html
What signs and symptoms indicate problems?
Be sure to keep your eyes and mind open to issues your child may be having. Things to look out for at anytime...
Not able to suck properly could mean feeding difficulties.
No bowel movement could mean possible bowel obstruction.
Coughing and wheezing could mean asthma or chronic lung disease.
Your child is not learning new things could mean developmental delays.
Feedings coming back up could mean Gerd, Reflux or Gatroparesis.
No weight gain could mean failure to thrive or oral adversion.
Not hearing well could mean a hearing loss.
Spine curving could mean scoliosis or musculoskeletal deformities.
Low oxygen levels could mean need for oxygen.
Seizures could mean neurological problems.
Becoming very sick, not acting themselves, not hungry, difficult breathing, fever or green bile could mean enventration of the diaphragm or reherniation of the diaphragm. For a full list of signs and symptoms see this link.
http://cdhkids.blogspot.com/p/signs-of-reherniation.html
How can I protect them?
You can protect them by keeping them away from large crowds for the first 12 months if possible. Always wash your hands and use good sanitary measures.
Am I worrying too much?
You will almost always worry. This is all part of being a good parent. It is important to know the signs of trouble and keep them in the front of your mind at all times. Do try and relax and enjoy your child... after all they are just that "your child".
This site offers parents ways to be aware of problems their child may face. There is no two cdh children alike. However many have the same issues.
We also have a page on facebook called, "Raising Healthy Diaphragmatic Hernia Children" for instant questions and answers from other CDH parents. Feel free to check us out.
