Here's what she wrote:
I have alluded to the fact that Tiny has a couple of health challenges. I really have not wanted to discuss them on my blog because I guess in a sense it makes it that much more real. I am not at all in denial about her issues but I just keep praying and hoping that somehow they will magically resolve themselves. Well, it is not going to happen and I felt that now was the time to share my experience parenting a child with neutropenia.
“Neutropenia” is a condition in which the number of neutrophils in the bloodstream is decreased. Neutrophils are a type of white blood cell also known as polymorphonuclear leukocytes or PMNs. Neutropenia affects the body’s ability to fight off infections. Neutrophils contain enzymes that help the cell kill and digest microorganisms it has engulfed by a process known as phagocytosis. Neutrophils are made in the bone marrow and released into the bloodstream. The neutrophil has a life-span of about three days.
To help you understand neutropenia, let me briefly explain how this condition is defined. The white blood cell count (WBC) is the number of white blood cells in a volume of blood. The normal range for the WBC varies slightly among laboratories but is generally between 4,300 and 10,800 cells per microliter or cubic millimeter (cmm). The absolute neutrophil count (ANC) is determined by the product of the white blood cell count (WBC) and the fraction of neutrophils among the white blood cells as determined by the WBC differential analysis. For example, if the WBC is 10,000 per microliter and 70% are neutrophils, the ANC would be 7,000 per microliter.
An ANC of less than 1500 per microliter (1500/microL) is the generally accepted definition of neutropenia.
Neutropenia is further classified as:
Mild if the ANC ranges from 1000-1500/microL;
Moderate with an ANC of 500-1000/microL;
Severe if the ANC is below 500/microL.
Tiny’s ANC range is generally 300-400/microL. Yes – she is in the severe category.
This is really, really scary for me as a parent. There are a lot of consequences of neutropenia that I have to be aware of. Neutropenia results in an increased susceptibility to bacterial infections. A simple cut or scrape can turn into a pretty big deal for Tiny. And as we all know, little ones are constantly getting scratched up. The most common type of infections are caused by bacteria normally found on the skin (such as Staphylococcus aureus) or from the gastrointestinal and urinary tract. Fungal infections are also more frequent. The infections may be limited to certain areas of the body (commonly the oral cavity, genital area, and skin) or may spread via the bloodstream to the lungs and other organs in severe, prolonged neutropenia. Yeah – heavy stuff....
When Tiny gets sick, her ANC count plummets. Let me rephrase that. When Tiny gets sick, her already low ANC count plummets. Keeping her healthy is imperative. However, I do not want Tiny to live in a bubble and keeping her away from germs is impossible. I am very mindful of where I take Tiny. If she has to go shopping with me I try to go during low traffic times. I do not allow her to sit in the cart and instead prefer that she walk around and help me pick out items. Playgrounds are chalk full of germs but at the same time they are out in the fresh air. I don’t avoid playground equipment but I do avoid Tiny playing with children who I do not know. Not all parents keep their sick children at home.
Birthday parties, get-togethers, play dates and the like are all on a case by case basis. If Tiny has recently been sick then it is not worth the risk of exposing her to germs in a large group of people, especially children. Even when she has been really healthy, it seems like whenever we go somewhere where there are lots of children, Tiny ends up ill. Right now, parenting Tiny is wearing me down. She has been sick basically since November. She will be symptom free for a week and them bam! Another illness strikes. The tiniest of germ that sneaks into our house just ravages her. She cannot get her ANC count up high enough to fight off the germs that most children are not affected by.
The issue with Tiny being sick so often is that IF a bacteria entered her system through a cut or scrape, she might not be able to fight it. Antibiotics could be the simple solution but there is a greater possibility of her ending up in a hospital in critical care. And my personal belief is that you end up with more problems by being in a hospital than you do by staying home and trying to treat things. Right now we are under the care of a great group of doctors. Tiny sees both a naturopath as well as a pediatric hematologist. She has her blood tested regularly (and is such a brave soul about it) so we have a good idea where her ANC levels are. So far we have no answers as to why she has neutropenia. All we know is that she was probably born this way although we did not discover it until she was about a year old.
Eventually, further testing may be needed. Right now, her hematologist feels that bone marrow testing is too great of a risk. She feels confident that Tiny does not have one of the more serious causes of neutropenia. It is highly likely that she has one of the viruses that constantly attacks the body’s ability to produce neutrophils. Down the road we may need to be more aggressive in treating this but for now, we are on a lot of homeopathic remedies. I also pump Tiny full of nourishing foods including bone broth, fermented cod liver oil, and coconut oil. Thank goodness she loves them all! Extended breastfeeding certainly is playing a very supportive role as well....
I cannot live my life in a doom and gloom state of mind over Tiny’s health woes. I admit that when she gets sick I do go on high alert. I freak out if she skips naps because I know her body needs rest. I get worried if she refuses to eat. But mostly, I just worry over what I did to cause this. Was it something that happened in MY body while I was pregnant? Was it the C-section birth that set her up for this condition? Was my breast milk not as powerful as it should have been? Seriously, these are the thoughts that go through my mind. I want to protect Tiny. I want to keep her away from every germ. I want her to say healthy for several months in row so her body can heal and hopefully begin producing those neutrophils she so desperately needs. But I have to balance my mother-bear instinct of protecting her with living life. None of us knows how long we have on this earth and my goal is to make sure that while Tiny and I are here, we live life to the fullest. So I will not keep her in a bubble. I will let her go out and get exposed to whatever germs are lurking. I will protect her from obvious germs and continue to support her homeopathically. But most of all, I will love her. Because neutropenia or not, she is still the most special, important person is my life.
...AND now you know! We haven't come to the realization of the severity of Maci's illness. Maci's ANC levels were at 0, nothin', notta, zilch! As of Monday they increased to 0.3, not much improvement - but the doctor said that was a HUGE improvement. Having this be so new to us, I feel ignorant to it all. We've been praying for her wellness and a quick recovery but she has a long road ahead!
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