Just a simple family's experience with the possibility of a child with Trisomy 18

Sunday, February 5, 2012

Not Sure Yet


     About two months ago we had our first ultrasound and saw that: 1. We were having a boy, and 2. He had all his limbs and things looked well except for some fluid in his kidneys and some Choroid plexus brain cysts (our third child also had the brain cysts, but he is fine and well, alot of babies and adults have them and they don't know why). The ultrasound Dr. told us we should have another ultrasound in 6 weeks to check up on the kidney and cysts.  But then the next day we got a call from my wife's OB telling us about her AFP blood test. It alarmed us because he doesn't usually call, most matters are handled by his nurse.  He found that the baby could possibly have Trisomy 18.  He sounded concerned and asked what the baby's original due date was, and said that since it was different than what he had written down he would recalculate the risk factor, check out the notes from the doctor who performed the ultrasound and then call back.
      He called an hour later (2nd alarm), and told us the risk was the same and that we could have another ultrasound the next day (3rd alarm).  My wife asked what Trisomy 18 was.  He downplayed it, to not freak her out, and told her the baby could possibly have external defects.  She asked if anything could be done about it.   He said no, and so we decided that we would wait until the next ultrasound in 6 weeks.  The OB suggested that it be done by a Perinatologist.
     Well, of course, we were a little stunned by the news.  What would we do if our baby had defects, how would other people treat him.  Well a few days later my wife decided to look up Trisomy 18 on her own, because she likes to be prepared.  Trisomy 18 basically means he might have an extra 18th Chromosome (3 #18 chromosomes instead of the usual 2). (i.e. Downs Syndrome is Trisomy 21). But what the doctor didn't say is that the babies typically have a wide range of defects, both internal and external, and the damage is bad enough that most of them don't survive to their due date, and those that do, pass away within the first couple of days or weeks.  A few have lived up to a year, and there is 1 documented case of a 30 year old with Trisomy 18.
        Wow, talk about being in shock!  We decided to say a prayer.  A sense of peace quickly came over us.  We are members of the Church of Jesus Christ of Latter Day Saints and we believe in life after death.  We also believe that children that pass away before the age of accountability (around 8 yrs. old), are automatically allowed to live with our Heavenly Father.  We are sent here to this earth as a test.  We believe that those who die before the age of accountability are so righteous that they don't require an earthlife test.  All they need is a body so that they can return to live with Heavenly Father.  We also believe that once we die we continue to do our Heavenly Father's work.
        This knowledge gave us comfort.  Even though we feel a sense of loss that we might lose our baby, we know that if he does happen to pass away that he must be one of our Lord's most valiant and righteous servants.  We know that we need to try and be the best that we can so that we can be worthy to live with our child again.
        So, in the meantime, we pray for this peace daily, and wait until the next ultrasound.

No comments:

Post a Comment