Where my journey began

My journey began eight years ago.  I had just begun married my best friend and started in a career I had worked for since childhood.  We decided it was a perfect time to start our family.  I became pregnant quickly with the first grandchild in our family.  It was an exciting time for all of us and I reveled in the joy of pregnancy and impending motherhood.  I also learned the morning sickness was a great misnomer as I felt sick all day long!  The sickness eventually passed and my stomach began to swell.  Maternity clothes were purchased and my ultrasound was scheduled.  We were thrilled to see the baby, our baby, on the screen.  The technician took great care in examining every inch of our baby. We left the ultrasound department that day with an unsettled feeling but at that time we had no reason to believe anything was wrong.  When we met with my doctor we were told there were some problems with the baby.  The kidneys could not be visualized, nor could the bladder and I had little to no amniotic fluid.  They also saw what appeared to be fluid sacs at the baby's neck and base of its spine.  We were told there were a few possibilities, but neither was compatible with life. Our child either had Trisomy 13 or 18 or Potter's Syndrome.  In our case, it would be Bilateral Renal Angenesis (BRA). Without kidneys, which produce amniotic fluid, the baby's lungs would not develop properly and the baby could not survive outside the womb.  Adding insult to injury, we were told that the baby could die at any time in utero.

The pain I felt at that moment was breathtaking.  Talk about being blindsided.  I had no idea such a condition existed and my faith in modern medicine was such that almost anything could be fixed.  It was beyond devastating to hear those words.  We were given a choice and time to consider it, early termination of the pregnancy or carry the baby as long as possible.  We went home and called our families.  My husband actually did, I could not say those words.  I remember how he cried and hoped to never hear that sorrow from him again.  He carried me that evening.  Next we researched and found little, but enough to confirm what the doctors had told us.  Despite this, I prayed for healing and I clung to hope for our baby.  It was a difficult weekend to pass.

A follow up appointment with a higher level ultrasound was scheduled and that ultrasound confirmed the earlier findings.  We met with a genetic counselor to determine if there was some genetic predisposition that could be ascertained through family history.  There was nothing.  I remember that appointment well, it was on the anniversary of Roe v. Wade, I believe the 30th anniversary.  I know this because it was on the news that evening.  I remember going to Baker's Square for dinner that night and having pie for dessert.  It was also the very first time I felt my baby kick.  We then decided that I would carry the baby as long as possible and that his or her life would be taken by a power higher than ours.  My job was to give the baby life and our job was to prepare to say goodbye when that life ended.

It was at that point I realized I had not purchased one item for my baby yet.  Five months and nothing, I now look on it as a mother's sense that something was not right.