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My name is Carey I am 25 and ahad my cdh baby at 35 weeks and they didn't think he would make it but he is almost 2 months old doing good still fighting the fight though
Hi I am Tanya and I had my beautiful princess 14 years ago and she was born with a left side CDH was full term and had pulmonary hypertension among being on vent from day one and she was placed on EMCO and had her CDH surgery on it and then was removed she was in the hospital for over 6 months and she has had many surgeries and problems she was doing really well and we noticed she wasn't showing signs of becoming a lady and she was still small so now we find out she has Turners and her puberty gland ...
On September 8, 2015 we found out our son had CDH. On September 18, 2015 we found out the CDH was a result of Pallister-Killian syndrome. As we were heartbroken, we remained to have hope. MRI showed he had no left lung growth, stomach, intestines, and majority of his liver was up on the left side. We were given a 0-1% chance survival rate. At that moment, we had to decide what would be best for our baby to not struggle or live a horrible life, and that was to do comfort care when he was born. ...
I found out my son had cdh on my 22 week scan only his stomach and intestines where in his chest but I found out when I was 25weeks that Alfie's lower valve of his liver is also in his chest his right lung can not be seen as it is being compressed and his heart is also being pushed and compressed his right lung is visible but also being compressed the doctor keep saying the same thing all the time he has a 50/50 chance of surviving and I have been told he could have a heart attack at any point so ...
I'm scheduled to have an MRI on Dec 17th to see what our daughters lung volume is. and I have no idea what to expect especially being pregnant with twins. I've only had 1 other MRI. I have no clue what going to happen or if doctors will even be able to get the proper results for our daughter. All I was told is it'll ta I ever about 40 mins. I'm so anxious about this MRI and the results.