Eck, Joshua Liam Siddhattha

[left:7c1795dee8]http://www.cherubs-cdh.org/Album/new/Eck-Joshua2.jpg[/left:7c1795dee8]I have been trying to write this for 2 years now. Every time I look at my son, Joshua, my heart just melts. This is the story of Joshua Liam Siddhattha Eck.

My OB knew that I had problems with my first two children being preemies, so they kept a close watch on me. I had ultrasounds every other week from 16 weeks on. At 31 weeks, I was put in hospital for pre-term labor and bleeding. I was there for 8 days until my water broke . The hospital I was at, was unable to care for preemies younger than 35 weeks, so I was sent to another hospital near by. It was then that they found the CDH. I knew something was wrong when the tech turned the screen so I couldn’t see it. I kept asking what was wrong with my son, but she never answered. It wasn't until several hours later when 2 pediatric surgeons, the hospital social worker and a nurse came into my room with a tray. They told me I needed to have an amnio done because my baby had a CDH. I had no idea what that even was! After the amnio was done, the surgeons told me that my baby would most likely need to be on ECMO and they would have to send me to yet another hospital. I was taken to the University Of Michigan Medical Center, where I had Joshua on February 17, 2001. This move was so sudden, that my husband was not there for the birth of our third child. I didn't even have a chance to look at Joshua after he was born. They just rushed him out so fast! I did, however, hear him cry – something that they never expected him to do!! It was 4½ hours before I was allowed to see him. They told me to be prepared for the worst. I walked in the NICU to see my tiny 4 pound baby hooked up to tubes and wires and he had the ventilator tube that covered his whole face. I was shaking so bad, that they had to help me sit down. I have never seen anything like that before! I just sat there for hours, waiting for something to happen. The doctors told me the first 48 hours were the most crucial and "not to get my hopes up to high.” The next day, my husband Dave brought our two older children, Cameron and Madeline down to the hospital to see Joshy. Maddie wouldn’t even look at him and Cam just wanted to know why Joshy was sick. We didn’t have any answers for him. That night, we were checked into the Ronald McDonald house. The doctor called us at 3:45 that morning to tell us that Joshy had just crashed on full life support and we needed to get down there right away. I went in and the ECMO machine was next to his bassinet. They were about to put him on ECMO but for some reason, he had stabilized. I didn’t leave his side for the next 10 hours. He was improving, slowly. He was 9 days old the day he had his first surgery. It seemed to take forever, although it was only 2 hours. He looked so different. His chest no longer made him look like a football player. He looked normal, with the exception of the swollen face and hands that he had. The next 9 days went by with no problems, so we decided to take a day trip home so the kids could play with their own toys and visit with close friends. The 10th day Joshua was removed from the ventilator! After looking at him for 19 days and only being able to touch his little feet, we got to hold him for the first time! I cried so many happy tears that day! The rest of his stay in the NICU was spent trying to teach him to eat. He didn’t pick up on that right away. He never wanted to nurse, so I was pumping and we were feeding him by bottle and NG tube. We got to bring Joshua home on April 4! But our story does not end there. Two weeks after we came home, Joshua re-ruptured and needed emergency surgery. He spent a week back in Motts Children’s Hospital. Everything seemed fine until the first week of June. He was acting funny and not eating without gagging. We went back to Ann Arbor only to find out he needed yet another surgery. His reflux was so bad, they decided to do a Nissen wrap and remove the pyloric stenosis. Two hours into his surgery, someone came out and told us that Joshy’s insides were all fused together and had nothing but scar tissue and that’s what was taking his so long. A few days after his surgery, we got some very bad news. Some how during the surgery, 6 inches of his small intestine had died and they had to remove it. By doing this, Joshy ended up with a very serious case of E. Coli. Then, more bad news. He had a fungal infection that had reached his left kidney and his heart. He was given the nasty anti-biotic Amphoterrison – or Ampho-terrible, as the nurses liked to call it. He was on that for 21 days. Joshua spent 2 months in the PICU because every time he got better, he ended up sick again. But finally once he was eating by mouth and by his feeding tube without gagging, we got to bring his home! He has had several hospital stays sense then, but nothing like those 4 months! He is still using a nebulizer for his asthma and we found out that he has lung and heart disease. We are taking it one day at a time and every day I thank the stars that I am able to have him with us! Joshy just turned 2 and I can’t believe how much he has changed! I just want to thank everyone at CHERUBS for the support and advice that I have received during these 2 years. Thank You so much! All my love, Cristie – A picture of my Joshy taken just a few weeks before his 2 birthday, is being sent along with this email. Thanks again!!!


Written by Joshua's mom, Christie Eck (Michigan)
2003