Becoming a special needs parent is challenging, & has a steep learning curve. I hope to give you a glimpse into my corner of the world, what I have learned, & what my life is like because I happen to love a miracle.
Saturday, August 6, 2011
In Case You Are Wondering Why...
I have a particularly ugly medical history when it comes to trying to have a baby. Simplifying a complex storyline down to just a paragraph: I had 5 miscarriages before I got pregnant with my son. Had to go on bed rest at 28 weeks, because we found out I was already dilated 3 centimeters. A couple of weeks before, I had failed to recognize that the severe lower back pain I had experienced all night at work was actually preterm labor. I knew something was wrong, but since all the pain was in my lower back, I just thought I hurt it repositioning my 300 pound sedated patient. I was hospitalized 3 times with preterm labor, before delivering my son by emergency C-section for fetal distress, just two weeks early. Being gluttons for punishment, we decided to try to give him a sibling, then I had 5 more miscarriages. Early in my last pregnancy, I lost my daughter's twin, then several weeks later went into preterm labor, and delivered my daughter 3 1/2 months early, at just 26 weeks gestation.
I thought you might be wondering why I would have so many miscarriages, and why all the preterm labor? The following is my best attempt at an explanation:
As it turns out, I have lots of risk factors. After the loss of our third baby, we did chromosomal testing on the baby, my husband, and myself, to see if there was some genetic reason that we couldn't have a successful pregnancy. Those tests came back fine, so no answers there.
We did a clotting profile on me. At that time I was unaware that when they do a regular clotting profile, they only check for the 5 most common clotting issues. That test came back showing that I have the MTHFR gene mutation.
This is a pretty common gene mutation. We all get two copies of this gene. If one is the mutated version, and one is the normal version, you are said to be heterozygous for that mutation. If you have two mutated copies then you are considered homozygous for that mutation. Having two bad copies is worse than having just one. I have just one bad copy. That in and of itself, is not so bad. I was told, "Usually, you would do okay with that." The gene involved helps create an enzyme that makes and circulates vitamins B6, B12 and the all important folate (folic acid). I was told to take extra of those vitamins on top of the prenatal vitamins I was already taking. Having this gene mutation makes one more prone to clotting, having strokes, blood clots in the lungs, and babies with neural tube defects, all kinds of fun stuff.
I also had a low level of the anticardiolipin antibody. Among other things, this abnormal antibody attacks a protein in the cell membranes of your heart muscle. That sounds bad doesn't it? It is one of the abnormal antibodies that you find in patients with Lupus. I don't have the other Lupus antibodies, and I don't meet the diagnostic criteria for Lupus. This antibody also makes you prone to clotting. I was sent to a Perinatologist, for one visit only, to discuss these findings. He decided he wasn't sure that these two things alone, were the cause of our miscarriages. He speculated that I might be clotting off my placentas. He told me to take a baby aspirin once a day, then sent me back to my regular OB.
I had another miscarriage, then started taking a whole aspirin a day.
I got pregnant with Logan, then started taking two whole aspirins a day.
We took a year off, after Logan was born, then started trying again. I had 4 more miscarriages, after each one, I would ask the OB, "Is there is anything else we should be doing? Is there anything else we should be testing for?" She would always say, "Just keep trying." Eventually, I called my OB, and told her I wanted to see a Perinatologist, she looked over my chart and realized I had never had a COMPLETE clotting profile. They don't do those lightly, because they are very very expensive. She said, "Let's run this test before you see the Perinatologist. He will want it." In retrospect, I think I should have asked to see the Perinatologist much sooner.
The complete clotting profile showed that I also have a PAI 1 gene mutation. This one is a little more serious than the MTHFR mutation. The PAI 1 gene mutation comes in 3 versions. I have the 4g/4g version. This gene mutation also makes me prone to clotting. It puts me at moderate risk of pretty much everything bad that can happen in pregnancy, fetal death, preterm labor, and an increased risk of my own death are among them.
These three things, the two gene mutations, and the abnormal antibody, along with my age, my gestational diabetes, (which converted to type 2 diabetes in Nov of 2008) all work against me. They think I was probably clotting off my placentas.
The first thing the Perinatologist did was put me on a blood thinning shot twice a day. Starting two days after I ovulated. I continued to give myself two shots a day, until I delivered Morgan.
So, I guess the moral of this story is that I should have been to see the Perinatologist sooner. He said even without the complete clotting profile results, that I should have been put on injectable blood thinners much sooner, just based on the number of miscarriages I had suffered. Hind sight is 20/20.
The fact that both of my kids also have an autism diagnosis is another issue entirely. How much of that is based in genetics, and how much is caused by various environmental conditions, or exposures like vaccines, is a subject of heated debate in many circles. It is my own feeling that both play a role. It doesn't make sense to me that we would have an epidemic of a purely genetic disorder, and I simply don't buy the idea that we are just diagnosing it more often. I believe the rate of occurrence is increasing at an alarming rate. I think that in all likelihood, we will eventually find that there are certain genes which predispose someone to autism, and that those genes are interacting in some way with something in the environment. I hope we figure it out soon, because the cost in terms of affected lives is staggering.
The above is the "why" behind what happened to me, at least in physical, or medical terms. The "why" in terms of religion, spirituality, or fate, is something I am still getting my arms around. I may tackle that topic in another post some day.