The Story of Liam James

I've been with my high school sweetheart since 2005. After many ups and downs of regular life, we decided to get married in 2012. It was a dream come true, but of course we were now ready to take yet another step forward - children. 

After suffering a miscarriage in April 2013 we were thrilled to find out that we were again pregnant in July. We were expecting a son April 15th 2014. We couldn't have been any happier. Out family and friends showered us with gifts, love and support. We spent hours designing and building a nursery and converting our house to welcome out baby boy. Everything throughout the pregnancy was perfect. I had little nausea and fatigue, I worked out lightly throughout the entire pregnancy and made sure to take vitamins and eat well. On March 25th I began having contractions. I planned on having a natural birth but Liam had other plans. His heart rate wasn't as strong as they wanted it to be for any pain medication. After monitoring him for some time he seemed to become distressed and aspirated meconium. It was time for a cesarean. 

Liam was born 6lbs 9oz, 18in at 3:40pm. Everything was perfect. Then they took him away to examine him. Things changed quickly. I was informed that I had preeclampsia. Preeclampsia is a pregnancy complication characterized by high blood pressure and signs of damage to another organ system, often the kidneys. I was taken to a different room, not allowed any visitors and was on strict bed rest. During this time I was also told that Liam had stopped breathing during his exam. He was sent to the NICU for evaluation and I was unable to see him for one of the longest days of my life. Everything seemed fine with him after that and eventually I was well and able to visit him. They cold us he had a very high CRP.  C‑reactive protein is an annular, pentameric protein found in the blood plasma, the levels of which rise in response to inflammation. A normal high CRP is 4. Liam was at 14. The doctors said they'd never seen a level that high. Normally anything over 5 was due to some sort of major surgery.  They assumed it was an infection from him aspirating in the womb. They did 7 days antibiotics and we thought we'd tAke him home shortly after. His CRP dropped after the antibiotics but as soon as they stopped it shot back up again. This went on for a month. Sometimes he breathed quickly and was giving air to allow his body a break from working so hard. Sometimes he breathed too quickly to be bottle fed so he was given breast milk through a feeding tube. Rarely. But to make safe. They did two other rounds of antibiotics (different types) with the same result. Our doctors were consulting in infectious disease specialists from around the country for answers. After drAwing blood so often and endless tests he also became anemic. He had a blood transfusion and that seemed to help. But the high CRP remained. No one had heard of such a thing. He acted completely normal. He was fed breast milk at all times through a bottle unless my milk supply was low which was only at the beginning. We visited him numerous times every single day in the NICU. He was transferred to Sunrise hospital for more testing. They checked his blood, spinal fluid, brain, lungs, stomach, heart, etc at least twice or more. Ran tests for terrifying diseases that no mother even wants to think of. Everything always came back negative. Which we were happy about, but still didn't have any answers to his elevated CRP. After a month of this - and no changes or answers - he was discharged.

 Life at home was great. He was an amazing baby. Slept well at night when his days and nights weren't mixed up at least. We went to the movies, shopping, walks at the park and more. We met with his Pediatrition, and all of his specialists to follow up. After all of those appointments everything was still fine. We were even told that this could be something that may go away by itself. 

On May 20th Liam was on his tummy time mat and was fussing (he hated it) and I noticed his breathing sounded different. Almost like a rhythmic grunting. He calmed down and was fine but seemed very exhausted after. We paniced of course and took him to the ER. They looked at him, x rayed his chest and said he seems normal. We went home. He had just had a follow up with his Pediatrition and heart specialist that week.  Everything seemed fine so we thought maybe we just overreacted and he was worked up. On May 28th it happened again. At first I thought he'll be fine, they weren't even concerned at the ER last time but it still freaked me out so we called a nurse and took him back in. Since it was his second visit for a breathing issue they sang a different tune. They x rayed his chest again, drew blood and checked his vitals. This time they said they saw pneumonia and that he was severely anemic. This wouldn't have been from the two blood draws. This too was abnormal. After taking the blood and with all the chaos he began to have a fit again, this time his levels dropped and the room filled with doctors. Everything went very fast and in slow motion at the same time. I don't need to describe what happened next. I would never even want anyone to imagine it. 

We lost our son May 28th 2014. He was two months and three days old. We still do not know what was going on in that precious little body of his. We did opt for a full autopsy to get any type of answers we can. Maybe it will help with some type of closure. I know people say " don't blame yourself " but you truly cannot help but wonder "what if" ALL the time. Maybe there was something I missed. Maybe I should have noticed something abnormal. A clue if some kind. But being first time patients what IS normal? The doctors, books, and articles all say "every baby is different". "Normal" didn't exist. Faster breathing is sometimes normal for infants , that seems normal, his diaper is normal for him, he's sleeping normal, acting normal. What is normal? We were always told he was fine. We watched him  more than over cautiously. We read books. We planned and prepared. We did everything you were supposed to so. But I guess it wasn't meant to be. 

I could go on and on forever. But I'll try to break this up. Long story short - I got to spend two amazing months  with my son. Time I'll never forget. Time I'm thankful for. I don't know where to go from here but Liam James is and always will be - my baby boy, my little superhero. A big peice of my heart will be with him forever. I'll never be the same. The innocence of the world left with you. 

I hope this can help others that have went through similar things. Or that it will help me to just share his story. Or of there's a similar situation I hope maybe this will help solve the mystery of a high CRP should this tragedy ever arise again. 

***Update***

About a month later, we recieved autopsy results. You can find the diagnosis here.

The Results