Mom to Liam James
March 25, 2014 – May 28, 2014
Las Vegas, Nevada
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: firstname.lastname@example.org