AmandaA

This is my story.....
I'll never forget the day I found out my sweet baby boy Riley had a left sided CDH. I was 18 weeks pregnant and I was so excited to find out if I was having a girl or a boy. To my joy they confirmed he was a boy, and then they sent the radiologist in to speak with me. I was scared but had no idea the journey I was in for.
I was told briefly what the condition was but was very confused so I did what anyone in my position would do, I googled it. To my surprise a CDH was a much bigger deal than they had lead me to believe.
In a few days I was refered to the brilliant doctors at Mt.Sinai hospital in Toronto to oversee my care and it was there that I later learned how severe Riley was.
I was told he had a 10-15% survival rate and that I could terminate or proceed. My boyfriend and I decided we would do everything possible for our son so we decided to continue with the pregnancy.
I was offered a new experimental treatment to help Riley's lungs expand while in utero. It was called Fetal tracheal occlusion (FETO). The procedure was carried out in Toronto and I was the first to ever have it done in Canada. It is practiced in Belgium so the Dr's from there came to assist. The procedure was a success and Riley had a blocked airway with a balloon. One week later my water broke. I remember thinking this is it, he is gonna be born today and he is too small. I was 30 weeks pregnant at this point. And the scariest part was that if i went into labour before making it to the hospital was we were in big trouble because the balloon was still blocking his airway.
I arrived at the hospital contracting with a broken water and everyone thought that day was the day. Much to our surprise the Dr's were able to stop my labour and I sat in the hospital for 40 days and 40 nights before they delivered Riley Via exit procedure c-section to remove the balloon. He was 5lbs 4oz when he was born and he was prefect on the outside. He was stablized and transfered to Sick kids hospital in toronto. Riley had some good first days at sick kids where we believed he would soon have surgery to repair his CDH, but 9 days after his birth he started to have a pulmonary hypertensive crisis and had to be placed on ECMO in order to survive. Riley spent a little over 2 weeks on ECMO and the doctors told me he would never survive if he was taken off, and that if he did come off they could never put him back on. Much to our surprise one day I got to the hospital and I was told Riley was ready to be taken off ECMO. He did wonderful and made it to surgery one week later. We were so proud, but sadly this is not the end of my story.
One week after surgery Riley started having pulmonary hypertensive crisis on a daily basis. 4 days later he was in the same boat as the day he first went on ECMO, however this time it was not an option. The decisions my boyfriend and I made that last day of Riley's short life were the hardest of our lives. On Nov.21/2010 six weeks old our sweet baby Riley passed away in my arms. I miss him more than words can say and I love him so much, however I am able to find strength in knowing that he is an angel now and he is no longer suffering. Riley was my miracle, and although I only had him in body for a short time, I will have him in my memories forever. Mom and dad love you forever baby xoxoxox