At the mention of the word “microcephaly” people immediately think of the children with a very small head and titles that the disease can potentially be associated with fever Zika. But actually notice this rare birth defect is not so easy. I know what I’m talking about: my six year old son, Blake received the diagnosis when he was one and a half years.
Our journey began with the inspection. In the year and a half Blake still could not he sit or walk and not particularly mentioned. This is all troubling signs, of course, but I do not think that we are facing something serious. He spent a large part of his young life in the hospital – in five months, he was operated on due to volvulus, and then he happened to hold there for a few days because of flu and other illnesses. So that such a delay does not seem to me something awful in the development.
Nevertheless, our pediatrician was alarmed and sent us to a neurologist, who demanded an MRI. We were given a copy of the test results, when we went to the doctor for the second time, and it was then that I read the diagnosis: “microcephaly”. (Worse, the results showed that the neurologist has put this diagnosis after the first visit, that is, two months before).
I was shocked. I felt as if my world collapsed. We have so many went with Blake, and now this!
I’ve never heard of microcephaly and had no idea that the head of our child was considered a little – like the fact that the small size of the head can be a problem if it comes to that. During my pregnancy, his head was in the normal range and remained alone before his son was 10 months (then that she became only 1.9% less than the norm!). Looking back, I think that the son had to make a diagnosis at a time, but for some reason it did not happen.
Once we got the diagnosis, I ran to look for anything that might be found on this deviation. This rare congenital defect affects the development of the brain, thanks to him, the head is smaller than necessary, and it is usually detected in the measurement of the child’s head near the end of pregnancy or childbirth.
Typically, this defect is the mother of the consumption of alcohol, drugs or toxic substances, a serious lack of supply, reduction of oxygen supply of the fetus during pregnancy, and infection – chicken pox, rubella or toxoplasmosis. In the case of Blake’s doctors believe that the blame is chromosomal abnormality, but in order to confirm this, we need genetic analyzes. My fiance and I demanded them from the receipt of the diagnosis, but our insurance refused to pay for them, arguing that it will not give money to the “blind search”.
If you pay out of pocket price – 5000 dollars, and it’s a lot. But we still want to collect the money to finally understand why this happened to Blake, and whether the same risk our future children will undergo. (We now have four children, and we want another one.)
At the moment, we are ready for anything.
In the meantime, we try to follow the advice of our pediatrician and try to understand what will be the future of our son. We do not know how all this has affected Blake’s brain and how it will affect his life, because all children with this congenital defect – different.
We do not even know if his condition deteriorates with age or better. Perhaps – although highly unlikely – that Blake will overtake their peers, but may be left behind. It seems that doctors can only guess.
Our pediatrician also reminded us that there will be cases where Blake will not be able to do what other children do, and that we must learn to live with it. Sometimes it’s easier said than done. Blake is behind somewhere in the three years of its development, which means that it still needs a lot of daily care and support. It is difficult to even get dressed on their own, and he must constantly repeat that we can not all pull in the mouth.
I have to remind myself, that’s how I bring up other children, are not always suitable Blake. It is especially difficult to discipline. It is difficult to give him a time out when he does not understand that he had done something wrong. Accordingly, our other children see that Blake never punished, and do not understand why this is so. We also can not give it the same duties and responsibilities as his other brothers and sisters, because it can not perform a task to the end, and it would be wrong to force him to do what he is obviously not able to do.
People often think that children with microcephaly can never be normal. Yes, the treatment options are limited, but early diagnosis and intervention can help. I am now looking for a more experienced doctors in neighboring states that could help our family. When raising a child with such a defect, you really need to be around people who understand what you’re going through the pass, and ready to help.
Great luck for me was to be found in the facebook group of children with microcephaly Fund. All participants undergo the same tests as me, and I get a lot of support from other parents. I rely heavily on this community: there you can express your feelings or ask for advice on doctors or schools. Frankly, I think this is the best resource for parents, who happened to be faced with.
Although educate Blake is not always easy, and there are a bunch of bright moments. I never thought that this could be such a joy. Yes, there are bad days when I feel as if beaten, but these days do not last forever. But there are so many good days, when Blake was able to learn what the doctors did not hope (for example, ride a bike or write), or learns something new in school and is very proud of. And these days, there are always more than the poor.
The material was originally published on www.parents.com . Story Ashley Williams recorded Bonnie Gibbs Vengrou. Translation is made especially for Catherine Lavrentieva Matrony.Ru.