Comments on: Kenyatta’s story http://www.babieswithnec.com/2009/kenyattas-story/ Just another WordPress weblog Wed, 14 Jul 2010 02:01:41 +0000 http://wordpress.org/?v=2.9.2 hourly 1 By: LondonDove http://www.babieswithnec.com/2009/kenyattas-story/comment-page-1/#comment-37 LondonDove Mon, 14 Jun 2010 07:46:01 +0000 http://www.babieswithnec.com/?p=180#comment-37 I also lost my son, Elliot, at 11 days. He was 6 weeks premature and had a coarctation of the aorta that wasn't diagnosed until it went wrong on day 2. The resulting loss of blood to the lower body led to NEC developing on day 10. Those 24 hours were the worst of my life culminating in the moment when I had to say yes, I was ready for them to stop bagging him. How could I ever be ready for that?! Until he arrested on day 10 Elliot had been improving and growing. He was only 3lb at birth. He needed to be at least 5lb for the operation to cure his heart condition but he never got the chance. NEC took that away. What we need are trained nurses who can spot the signs and are ACTIVELY watching for them. It's the nurses who spend the most time with our babies so they are the key in my opinion. And we need research into ways to prevent this terrible, terrible condition from taking hold. No-one should have to suffer the way Elliot suffered and it is the ultimate shock to learn that babies die in such ways. I also lost my son, Elliot, at 11 days. He was 6 weeks premature and had a coarctation of the aorta that wasn’t diagnosed until it went wrong on day 2.

The resulting loss of blood to the lower body led to NEC developing on day 10. Those 24 hours were the worst of my life culminating in the moment when I had to say yes, I was ready for them to stop bagging him. How could I ever be ready for that?!

Until he arrested on day 10 Elliot had been improving and growing. He was only 3lb at birth. He needed to be at least 5lb for the operation to cure his heart condition but he never got the chance. NEC took that away.

What we need are trained nurses who can spot the signs and are ACTIVELY watching for them. It’s the nurses who spend the most time with our babies so they are the key in my opinion. And we need research into ways to prevent this terrible, terrible condition from taking hold.

No-one should have to suffer the way Elliot suffered and it is the ultimate shock to learn that babies die in such ways.

]]> By: Keisha http://www.babieswithnec.com/2009/kenyattas-story/comment-page-1/#comment-30 Keisha Sat, 22 May 2010 03:13:47 +0000 http://www.babieswithnec.com/?p=180#comment-30 I am truly sorry for your loss!! My daughter Kennedi Maie was born April 22, 2010 and weighed 1 pound 14 oz. Having her for three weeks was the best 3 weeks of my life. She lost her life May 17,2010 after being transfered from Cypress Fairbanks Medical Center to Childrens Memorial hermann in houston tx. This is new to me and I am having a really hard time dealing with this. If anyone can help please do.. GOD BLES YOU ALL. I am truly sorry for your loss!! My daughter Kennedi Maie was born April 22, 2010 and weighed 1 pound 14 oz. Having her for three weeks was the best 3 weeks of my life. She lost her life May 17,2010 after being transfered from Cypress Fairbanks Medical Center to Childrens Memorial hermann in houston tx. This is new to me and I am having a really hard time dealing with this. If anyone can help please do.. GOD BLES YOU ALL.

]]> By: Najee http://www.babieswithnec.com/2009/kenyattas-story/comment-page-1/#comment-26 Najee Wed, 03 Mar 2010 06:54:30 +0000 http://www.babieswithnec.com/?p=180#comment-26 That's exactly what I am fighting for...that's the reason why I am not giving up on being a pediatrician because I also lost my son due to nec..and i really beliee tht early detection could have saved him That’s exactly what I am fighting for…that’s the reason why I am not giving up on being a pediatrician because I also lost my son due to nec..and i really beliee tht early detection could have saved him

]]> By: Linda Richards http://www.babieswithnec.com/2009/kenyattas-story/comment-page-1/#comment-22 Linda Richards Wed, 03 Feb 2010 20:39:42 +0000 http://www.babieswithnec.com/?p=180#comment-22 I am so sorry for your loss. My son was 9 weeks old when he died from NEC in 2008. Losing him was the most horrific experience and words cannot describe the pain that comes with grief. I hope some day a cure can be found. Currently NEC cannot be diagnosed by looking at an x-ray or blood work. There is no definitive cause or cure just a lot of educated speculation. I spent some time with one of the lead researchers after my son passed away. He was so gracious to answer my questions and explain where doctors were with research and successes. I am so sorry for your loss. My son was 9 weeks old when he died from NEC in 2008. Losing him was the most horrific experience and words cannot describe the pain that comes with grief. I hope some day a cure can be found. Currently NEC cannot be diagnosed by looking at an x-ray or blood work. There is no definitive cause or cure just a lot of educated speculation. I spent some time with one of the lead researchers after my son passed away. He was so gracious to answer my questions and explain where doctors were with research and successes.

]]> By: Tracey http://www.babieswithnec.com/2009/kenyattas-story/comment-page-1/#comment-17 Tracey Thu, 08 Oct 2009 23:48:44 +0000 http://www.babieswithnec.com/?p=180#comment-17 Im so sorry for your loss my ((hugs)) to you and your family. Your story is very similar to mine, my baby girl was born at 27wks and sadly was only with us for 11 days, i totally agree with you and mentioned this also to my hospital, it is very sad and makes me so angry that x-rays are not routine and are done when it is far too late especially when they know nec can take the lives of premature babies so quickly and can happen once milk feeds have started. Im so sorry for your loss my ((hugs)) to you and your family. Your story is very similar to mine, my baby girl was born at 27wks and sadly was only with us for 11 days, i totally agree with you and mentioned this also to my hospital, it is very sad and makes me so angry that x-rays are not routine and are done when it is far too late especially when they know nec can take the lives of premature babies so quickly and can happen once milk feeds have started.

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