What Does This Mean for My Baby?

Every since I was diagnosed with Syringomyelia and Chiari, I have been worried that my genes have been passed on to my children. They have not shown signs of having any syrinx or chiari symptoms; however, I am still worried someday it will happen. As rare as Syringomyelia is, I can't imagine my children going through what I have in the past few years knowing my condition will not get better. I don't want them to live that way.

When I found out I was pregnant, I was ELATED! We wanted a baby so badly and we were going to be blessed with our first child together and fourth child total. After a few days of blissful ignorance on my part, I realized that this is my first baby since being diagnosed with both syringomyelia and chiari. Syringomyelia is not known to be genetic, but chiari could be genetic. I was terrified to think that I could pass this on to my new little life.

My OBGYN group sent me to a perinatal specialist who could explain my genetic predispositions. My husband's first daughter (before our marriage) has Cystic Fibrosis so we were also concerned that I might be a carrier for that and that our baby could have both chiari and CF. It took me a while to feel comfortable enough to go to the doctor because of my guilt knowing I have possibly passed these on to my little one.

We found out that the baby had a less than 1% chance of having CF during our genetic counseling On September 19, 2012 we went to have our anatomy screen of our precious little one and discovered in great joy that we were going to have a boy! That was wonderful news for us because that meant we have two girls and two boys. Perfect family! We then focused our attention to the true reason for our scan which was to discover whether I had passed on the chiari gene to my sweet little boy. After a few moments the doctor said the words I had longed to hear...NO CHIARI! I was so excited that the chiari was not passed on to him that I could jump off the table and hug the doctor. 

Unfortunately, he gave me some news we were not expecting which is unrelated to the chiari, syringomyelia or CF. He told me that my placenta was low and that it can cause bleeding in the pregnancy and I may have to have a C-section. He never said the words "Placenta Previa" but I am concerned that is exactly what it is since the definition of that is a low lying placenta. There are a ton of possibilities for this condition and I am terrified. He did give me a glimmer of hope that I would not have any complications, though. He said that this happens to about 10% of the population and that 90-95% of the population will have the placenta move up and not cause any problems in the pregnancy. I am praying to be in the 95%.

Pregnancy and Syringomyelia/Chiari

Well it has been quite some time since I have posted and it was for a great reason...I found out I'm pregnant! I am presently 17 weeks and have been trying to acclimate to the lifestyle pregnancy and a neurological disorder provide to me. I wish I could say that it has been a smooth ride the entire time, but as you who have chronic pain understand, it is not an easy feat in normal circumstances much less with pregnancy added onto everything! I can no longer take medication to keep my symptoms at bay so this will be a difficult 9 months but the outcome will be a beautiful baby and it will have been well worth the pain.

First Trimester:

My first trimester went by without much of a commotion which was very nice. I didn't have morning sickness, I had limited pain (as limited as possible), and not a lot of syringomyelia or chiari symptoms. I was beginning to thing that pregnancy was my miracle pain reliever...NOPE! 

Second Trimester:

Well I am about a month into my second trimester and for most pregnant women, this is the best possible time. Most expectant mothers love this time because they can begin feeling the baby move, feel less morning sickness and get more energy. Unfortunately for me, it appears to be the opposite. I felt much better the first 13 weeks. I am extremely tired, in more pain than I was previously, and my symptoms have returned. I have discovered my twitches have returned, the burning in my face is back, the sensitive skin has come back full force and the fatigue, well I'm fighting sleep right now because I want to finish the blog!

On a positive note, the baby is doing very well and has passed all of the pre-screenings with flying colors. We will meet our little sweetheart in February and we are very excited!

Our Precious Baby - Due between 2/9/13 & 2/17/13