I'd mentioned earlier in the last blog that I was going to explain in detail what this condition is and how it's affecting Maddox.... well....
Congenital Diaphragmatic Hernia, or CDH, occurs when the diaphragm does not fully develop during gestation (around week 7 - 10 weeks). This creates a defect, or a hole in the diaphragm. There is no known cause of this defect. About 1 out of 2500-3000 babies gets this life threatening condition. The diaphragm is the thin muscle that separates the stomach contents from the chest cavity. The result of this defect is that the contents like the stomach, intestines, spleen and liver can migrate into the chest area. This impacts the lung growth. Since the lungs are not able to fully develop the way it should then the baby can experience dangerous high blood pressure in the lungs, or pulmonary hypertension. This is going to be our main concern for Maddox. There are different levels of severity with CDH. In Maddox's case, he has a severe left sided congenital diaphragmatic hernia, which means part of his liver is in his chest. The liver is more dense and harder than the stomach and intestines so the liver does not budge to allow the lungs to grow. Maddox had two echos done where a cardiologist checked the function of his heart and to see how well it's doing. The cardiologist said although his heart is moved to his right side, his heart is doing great! That was great news to us! : )
Tawa and I have never heard of this condition before in our life until October 28, 2010. At 17 weeks, we went for a 2nd level ultrasound screening. I noticed something was wrong when the screening was longer than normal. I started to be alarmed when the doctor was concentrating hard on his chest and stomach area for more than 40 minutes. Then he broke the horrible news to us, my heart fell and I just couldn't stop crying. I couldn't believe that this was happening to us. Words couldn't explain the hurt and pain that we both felt from that point forward. Ever since then we have prayed constantly and relied on Jehovah for strength to cope with and have prayed that Maddox's lungs grow. We have done so much research, talked to many doctors to get 2nd/3rd opinions and so forth. We did find a good team in Dallas but they weren’t too cooperative with respecting our religious beliefs. However, we felt much more comfortable with the care that Texas Children's Hospital has to offer our son. The doctor in Houston has previously performed CDH surgery on a JW baby successfully without the use of blood. (my previous blog entry talks about this) We met with the doctor and the meeting went well. With that said, we have decided to go down to Houston for Maddox's care. We will be leaving the first or second week of March. Maddox will require surgery as a newborn after he is stabilized to push down his stomach contents back into place and then the doctors will need to close up the hole in the diaphragm. This will also require Maddox to be in the NICU for awhile and we may end up staying in Houston anywhere from 1 to 2 or 3 months depending on how well Maddox handles the surgery and recovers.
Friends and family have been really supportive and we both appreciate it so much!! We couldn't have made it this far without the strength and comfort from Jehovah. One good scripture that I like to keep in mind and has given me much comfort is Ecclesiastes 11:5. I've also recently been getting a lot of support from other moms who have children with CDH. This has really helped me with research and getting real live experience. Talking to different ones who have gone through what I'm going through and can relate really does help. I've heard sad ending as well happy ending stories of CDH. One mom gave me a nice comforting thought that has helped me to actually enjoy my pregnancy. She'd wrote, "Miracles can and do happen...keep the faith, enjoy your baby as Maddox is safe inside you! :)" I told Tawa this and this has helped us both to just enjoy Maddox as much as we can as he is totally safe inside of me. That's the most important thing right now; that our son is safe and sound as can be. As long as Maddox is inside of me he's doing just fine as I am breathing for him. Maddox is kicking and so active, We both know that he will be a strong fighter when he gets here and we will be by his side fighting alongside him. Thanks for all of your love and support! We "3" appreciate it so much!
Congenital Diaphragmatic Hernia, or CDH, occurs when the diaphragm does not fully develop during gestation (around week 7 - 10 weeks). This creates a defect, or a hole in the diaphragm. There is no known cause of this defect. About 1 out of 2500-3000 babies gets this life threatening condition. The diaphragm is the thin muscle that separates the stomach contents from the chest cavity. The result of this defect is that the contents like the stomach, intestines, spleen and liver can migrate into the chest area. This impacts the lung growth. Since the lungs are not able to fully develop the way it should then the baby can experience dangerous high blood pressure in the lungs, or pulmonary hypertension. This is going to be our main concern for Maddox. There are different levels of severity with CDH. In Maddox's case, he has a severe left sided congenital diaphragmatic hernia, which means part of his liver is in his chest. The liver is more dense and harder than the stomach and intestines so the liver does not budge to allow the lungs to grow. Maddox had two echos done where a cardiologist checked the function of his heart and to see how well it's doing. The cardiologist said although his heart is moved to his right side, his heart is doing great! That was great news to us! : )
Tawa and I have never heard of this condition before in our life until October 28, 2010. At 17 weeks, we went for a 2nd level ultrasound screening. I noticed something was wrong when the screening was longer than normal. I started to be alarmed when the doctor was concentrating hard on his chest and stomach area for more than 40 minutes. Then he broke the horrible news to us, my heart fell and I just couldn't stop crying. I couldn't believe that this was happening to us. Words couldn't explain the hurt and pain that we both felt from that point forward. Ever since then we have prayed constantly and relied on Jehovah for strength to cope with and have prayed that Maddox's lungs grow. We have done so much research, talked to many doctors to get 2nd/3rd opinions and so forth. We did find a good team in Dallas but they weren’t too cooperative with respecting our religious beliefs. However, we felt much more comfortable with the care that Texas Children's Hospital has to offer our son. The doctor in Houston has previously performed CDH surgery on a JW baby successfully without the use of blood. (my previous blog entry talks about this) We met with the doctor and the meeting went well. With that said, we have decided to go down to Houston for Maddox's care. We will be leaving the first or second week of March. Maddox will require surgery as a newborn after he is stabilized to push down his stomach contents back into place and then the doctors will need to close up the hole in the diaphragm. This will also require Maddox to be in the NICU for awhile and we may end up staying in Houston anywhere from 1 to 2 or 3 months depending on how well Maddox handles the surgery and recovers.
Friends and family have been really supportive and we both appreciate it so much!! We couldn't have made it this far without the strength and comfort from Jehovah. One good scripture that I like to keep in mind and has given me much comfort is Ecclesiastes 11:5. I've also recently been getting a lot of support from other moms who have children with CDH. This has really helped me with research and getting real live experience. Talking to different ones who have gone through what I'm going through and can relate really does help. I've heard sad ending as well happy ending stories of CDH. One mom gave me a nice comforting thought that has helped me to actually enjoy my pregnancy. She'd wrote, "Miracles can and do happen...keep the faith, enjoy your baby as Maddox is safe inside you! :)" I told Tawa this and this has helped us both to just enjoy Maddox as much as we can as he is totally safe inside of me. That's the most important thing right now; that our son is safe and sound as can be. As long as Maddox is inside of me he's doing just fine as I am breathing for him. Maddox is kicking and so active, We both know that he will be a strong fighter when he gets here and we will be by his side fighting alongside him. Thanks for all of your love and support! We "3" appreciate it so much!
Hi! This is Brother Nichols. Our son James is the one that FOX did the story on. We will be Houston this week. We would love to talk sometime. Our email is kellytinanichols@earthlink.net
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