Tuesday, July 14, 2009

"Just A Fluke."

Something is in the air, my friends are all having their second baby, Leah is almost 2, we are moving into a bigger house--all things pointing in the direction that we may be ready at some point in the near future to expand our family.

With that said, just the thought of being pregnant has me completely terrified. I've decided that I MUST exhaust every single one of my options as far as finding out what might have been the cause of Leah's stroke and what are the possibilities that this could happen again. I NEED to know that I have done everything in my power to make sure that I was not the reason for Leah's stroke. I need to know that I have had every test and seen every doctor that needs to be seen before we can even think of remotely talking about being pregnant again.

This is why I decided to contact one of my good friends father, who is a very well-known, well-respected and very well educated high risk ob-gyn at Northwestern Memorial Hospital in Chicago. I spoke to my ob-gyn after we got Leah's diagnosis a year and a half ago, and after that we never really spoke about it again (I'm due for an appointment soon!). So, while I trust my ob-gyn, I know my friend father and I know that he would be honest with me and help me find the best professionals possible. I decided to email him a very long email with all of my questions and fears for getting pregnant again. I decided to ask him his professional opinion on the tests that both Leah and I received and their results. I decided to ask him why he thinks this happened based on information I gave him about my pregnancy. And I decided to ask him what he thought about us having another baby.

The email response from him was within a half hour of me sending it. It was well thought out and answered all my questions. I wasn't surprised by what he had to say, because quite honestly it's the same thing my doctor told me, the neurologist told me, the hematologist, the physiatrist etc. It was JUST A FLUKE.

A direct quote from the doctor, who worded it much better then just a fluke, is:

"The recurrence risk in subsequent pregnancies is thought to be very low, and I cannot remember a single time when it has recurred. I would characterize its occurrence as very infrequent and unpredictable (a fluke if you want to call it that), and do not know of any other testing that could or should be performed"

The fact that he has never seen a recurrence in all his time as a doctor is so interesting to me. It actually makes me feel a lot better. I find it very interesting that he does not think I need any further testing, as I have been tested for a whole slew of things and the only thing that came back abnormal was I tested positive for MTHFR. MTHFR is present in half the population, and has never been associated with a coagulation problem unless a person has not just one gene but both copies of MTHFR, which is still very common. I only have one. (Even then it can only be a problem if the two genes result in a high blood level of homocysteine, which is usually fixed with the amount of folic acid found in a single vitamin tablet taken daily.) So the MTHFR, is not a factor in why Leah had a stroke. Therefore all my testing is done and normal. In some ways I was hoping he would say, I think you should do this and this test and so on...so maybe we could find an answer. But, no such thing. Again, just a fluke.

He went on to write:
"So, the prognosis for the future is very good—it is extremely unlikely that his will happen again, even if you go ahead and have another 10 children. There is no reason you should not try again. Unfortunately, the reproductive process is not perfect and without risk, but your risk is probably not any higher than anyone else. If you were my patient, I would not do anything different for you as part of prenatal care, so there is no reason you have to see a high risk physician if you are happy with your current doctor."

It is beyond comforting to hear that my risk does not seem to be any higher then anyone elses. I also think it to be very interesting that he does not suggest a high risk doctor. I had the assumption that because Leah's stroke occur ed while in-utero that when I get pregnant again I would be monitored very closely. I understand that because there was no reason and sometimes these things "just happen" (i.e. fluke!) that there would be no reason to be monitored by a high risk doctor. Had we found a reason, or a gene that showed us why her stroke occurred then maybe they would watch me closer. Again, I have not discussed this with my doctor and plan too--if she suggests a high risk doctor, I won't turn down the opportunity to be monitored all the time!

I have to say that speaking to him and knowing that he knows his stuff was very interesting.

He writes:
"The area of fetal or newborn stroke is a very new one, as no one ever talked about it prior to the frequent use of CT scans, which is not very long. It also remains a murky field with lots of issues still yet to be defined, so patients often get different opinions when they talk to different doctors. I will give you my opinion on this topic, and hopefully it will not conflict too much with anything you have already heard."

I'm so glad I asked these questions. I'm going to continue to ask questions and pursue any sort of answer, because as you see even a very smart high risk ob-gyn, say that the area of pediatric stroke is a "murky field". We MUST ask these professionals all the questions that we have, so that they can continue to research and learn about these strokes. If nothing else, at least we could have hope of getting some answers one day, because lets face it there has to be a reason. I'll take fluke for now, but I want to work for answers. It is imperative that we as parents press these doctors to research more in hopes that one day there will never have to be another un-born baby that has a stroke, and that there will never be another parent that has to hear the doctors say "Your baby/child had a stroke".

As for us and our decision to expand our family, we still have some time. I still want to speak thoroughly to my doctor to make sure she agrees everything is good. Yes, we'd like it to be sooner rather then later--but we want a healthy baby. Right now, we are enjoying Leah so much. She definitely doesn't let her stroke stop her! We know that as sad as we get sometimes that Leah will have struggles in life, we know that things could be so much worse. We are so thankful to have her, she is a beautiful, bright, wonderful little girl and we are so blessed to wake up every morning to her sweet smile.