IMG_3657Tracey

Mom to Liam James

March 25, 2014 – May 28, 2014

Las Vegas, Nevada

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 15, 2014. We couldn’t have been any happier. Our 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 6lb. 9oz., 18 in. at 3:40 p.m. 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 told 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 of 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 given 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 be safe. They did two other rounds of antibiotics (different types) with the same results. Our doctors were consulting with infectious disease specialists from around the country for answers.

After drawing blood so often and with 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, and heart (etc.) at least twice or more. They ran tests for terrifying diseases that no mother even wants to think of. Everything always came back negative. We were happy about that, but still didn’t have any answers for 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. He slept well at night and his days and nights weren’t mixed up in the least. We went to the movies, shopping, for walks at the park and more. We met with his pediatrician, 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. It was almost like a rhythmic grunting. He calmed down and was fine, but seemed very exhausted after. We panicked, of course, and took him to the ER. They looked at him, x-rayed his chest and said he seemed normal. We went home. He had just had a follow-up with his pediatrician 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’d 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 on May 28, 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 could. 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 of some kind. But being first time parents, 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 and that seemed normal. His diaper was normal for him. He was sleeping normal and 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 piece of my heart will be with him forever. I’ll never be the same. The innocence of the world left with you [Liam].

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

[Results, July 24, 2014]

As it was explained before, Liam’s entire life so far had been a mystery. Why did he stop breathing during his first day of life? Why did he have such a high CRP for his entire life? Why did everything look and appear to be perfectly normal, yet we spent over a month in the NICU without any answers? Why was he having breathing spells after he turned two months? Why was he dismissed from the ER so easily the first time we took him in? Why did none of his specialists see any red flags? Why did he appear to so suddenly have pneumonia and be severely anemic? Why did his heart fail?

That last one hurts the most. I have been waiting for some type of closure or explanation. Now that I have one, I’m not sure I feel any better. At least now I know what happened. Some parents of tragedies don’t even get that much.Liam’s autopsy results showed a diagnosis of Idiopathic Infantile Arterial Calcification (IIAC). I’ll highlight the basics based on the extensive research I have done since learning of this disease.

There are less than 200 cases ever reported in the world. It causes calcification in your arteries. Calcification slowly grows and hardens the affected organs. This causes your heart and other organs to eventually overwork themselves to compensate for the calcification until failure. Calcification can show up on some types of scans but is usually not noticed because of how hard it is to spot and the rareness of the disease (no one knows about it enough to even look for it specifically) This disorder only occurs when both the mother and father are carriers of the mutated gene/disorder. If you are a carrier of the mutation, you are 100% unaffected by it. Unless you procreate with another carrier. Then you risk a 1 in 4 chance of your child having the disorder every time.

In these 200 cases, 85% of the patients were diagnosed under 6 months of age, postmortem, from an autopsy. Due to the difficulty of an early diagnosis and the lack of a treatment, there are only eleven long-term survivors (over 6 months of age) reported. However, there have been successful survival cases to go on to adulthood and some even life a normal, healthy life. In cases that the disorder was present in other siblings, they were able to closely monitor and look for signs of the disorder in future pregnancies. However, it is very hard to detect during [pregnancy] because everything appears normal. There’s a chance you may be able to see calcification (if present) in an ultrasound, especially if you know it’s a genetic issue and you know what you are looking for. But it’s not 100% positive. Prenatal and postnatal treatment with low-dose, cyclical bisphosphonates, also called diphosphonate has been used to prevent or cure the calcification. There are so few of these cases that it’s hard to prove long term survival rates.

My entire pregnancy was perfect, at least until I went into labor, had excessive fluid, swelling, and Liam’s heart rate was calmer than they’d liked. There were no markers of preeclampsia or the HELLP disorder that I was diagnosed with until after. No one could see anything wrong with Liam during the entire 65 days of his life. He was also “perfect.”

So. Now we “know” what happened. I do feel less guilt at the idea of it being something I did. I know, I know, everyone says that “It was nothing you did, nothing you could have done,” but you absolutely cannot rid that recurring thought from your mind until you have some type of proof. Or at least I couldn’t. You just replay every second of every day repeatedly wondering “what if.” I will say that in that aspect, I do have peace. Even though I knew this before, I can say confidently now that we did do everything for our son. We did. We were at the NICU every single day at least once, if not twice for 3-4 hours (or more) at a time. I pumped milk for all of his feedings, fed him, changed him, held him, loved him, comforted him; everything we were supposed to do. When he came home, we were nothing but positive and loving. We were happy to care for him. We switched off. We were a great team with such a promising future. We took pictures every day. We took him out to visit family, took him to the drive-in movies, restaurants, outings, and so so so much more. I love everything that we did get to do with him and experience with him. Even the abundant feelings of love, accomplishment, and completeness. I would never trade a second of it for anything in the world. We were the great parents we strived to be. We did a good job. For that, I can feel proud.

It just doesn’t make me feel any better about the fact that it was US. That it was HIM. That it’s because JUSTIN and I found EACH OTHER, and that caused THIS. I had a lot of anger. A LOT of anger. A lot of resentment, confusion, jealousy and just bitterness. You’ve heard these words before, but the amount of power that they had over me was unbearable. I still am not okay with it. But I refuse to suffer more for something that is so completely not my fault, not fair, and completely out of my hands. So I have been trying to not act on any of it and seek peace.

Justin and I thankfully are rock solid. We are very open with each other and are helping each other. This may close the book of Liam to others, but it will always be open to us and those closest to us. We will remember him forever. He will be incorporated into our family forever. Nothing can change that. We are also happy that we even got to experience this much of him. I like to believe that our souls have more than one cycle on this earth. I like to believe that he will be near me in other forms. I like to believe that even though his life with us was so short, we will be stronger and better for it, and that he enjoyed his short time with parents who filled his days with nothing but love, comfort, and kindness. There are even worse scenarios out there of tragedy to equally undeserving parents. Even though we hoped to have him longer, I am blessed to have had him and gotten to spend the 65 days with him that I did. 

Tracey blogs at: http://justanotherviewonlifeloveandbeauty.blogspot.com/

You can email her at: tracey.a.schlosser@gmail.com

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Comments

  1. Your story is simply heartbreaking and I admire your honesty and quest to find peace. Thank you for sharing your story and Liam’s story. Lots of love and prayers to you and your husband especially as you approach Liam’s birthday.

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