Aaron Jae

Aaron ready to go hunting with his Dad.

After suffering a miscarriage in May of 2002, my husband and I were reluctant to get too excited when I found out I was pregnant again in July.  But after an early ultrasound where we saw our baby’s little heart beating, we couldn’t deny the joy and hope any longer.  That seemed to make the horror that much worse when we found out at four months along that our sweet little boy had full Trisomy 18.  The doctors explained that it was a chromosome defect.  The good news- it’s not genetic, just a fluke of nature … the bad news … it’s nearly always fatal with a whole laundry list of possible anomalies, most of them quite awful to think of.  They encouraged us to terminate the pregnancy and try again.  I have always put my full trust in the doctors that have cared for me and have never had any reason not to.  My first instinct was to follow their directions, but I already loved this little boy.  I was torn … I was a mess. My husband didn’t want to terminate but understood that this was my body, my life and would ultimately support me whatever I chose to do.  I didn’t want to lose him but I didn’t want my sweet child to suffer either.  We read everything we could get our hands on, our friends and family were not sure what to do for us but surround us with love.  Eventually my mother-in-law encouraged me to speak with our priest.  I was reluctant because I knew the Catholic Church’s stand and assumed I would be TOLD what was expected of me.  But that wasn’t the case.  Fr. Brian listened to me, shared his thoughts about why God lets some children die and then encouraged me to stop listening to everyone else and listen with my heart, that I had to do what was best for me, God would take care of Aaron.

The decision was easy then, after clearing away all the information and opinions that were swirling around me.  I went to bed that night and in a dream I heard Aaron cry.  I heard his voice and knew that I could not part with him, that I needed to let him leave me when HE was ready to go.  We did our best to enjoy the pregnancy knowing it may be the only time we had with little Aaron. Aaron was in a breech position three weeks before his due date so our doctor tried to turn him, but our little guy was stubborn and refused to change positions, so a C-section was scheduled.  Aaron Jae was born on March 12, 2003.  He was so blue at first I was afraid we would lose him before I was out of the operating room, but he decided to stay for awhile.  Fr. Brian was there with family and friends to celebrate his baptism in our hospital room.  Just to hold him was a great gift, we didn’t dare hope to take him home with us, but four days later both he and I were released.  We had some scares with apnea, but Aaron seemed to be okay to all outward appearances.  He had none of the anomalies generally present with T18.  Slowly our little guy started to grow, most of the time we had to tube feed him because his breath/suck/swallow reflex was not well coordinated.   In June the specialists found a large hole in his heart but were amazed with how well his body had compensated for that.  We learned as we went along and he was very forgiving of his first time parents.  We had lots of help, especially from his two grandmothers who naturally spoiled him!  We went about the business of living, providing him with as many experiences as possible.  We did a lot of traveling to visit friends and family, and many loved ones came to visit us too.  We celebrated the 12th of each month as a “birthday” for him and he loved watching the local parade and fireworks on the Fourth of July.  We went up north with relatives for a week at a cabin where Aaron joined my husband and me on a boat for a little fishing.

Genetic specialists told us he would be incapable of true emotion, that his mental capacity would be limited to basic needs.  They were wrong … he knew us; he enjoyed looking at colorful books, his reflection in a mirror and the beautiful windows at church during mass.  He had a quirky little smile but it WAS a smile, mostly reserved for his stuffed yellow duck and his mobile! In August we took him to the county fair and he was interested in all the noisy strange animals, and had a great time dancing with Mommy and Grandma at a concert in the park. On August 21st, the fluid in his lungs became too much to handle on his own and he was hospitalized for the first time since his birth.  For three days we rode an emotional roller coaster.  On August 24th as my husband and I held him, Aaron Jae gave a big stretch and sigh and returned to his Heavenly Father.

For such a little boy, Aaron was so strong and brave … he lived an incredible life in the 5½ months he was here with us and touched so many lives. I am a much better person because of all he taught me and a much better mother than I would have been to his little sister Piper Jean born July 26, 2004 – healthy!  He is a part of our lives everyday.  We celebrate his birthday every year and he has presents under our Christmas tree.  We were given such a wonderful gift and a treasure chest of memories that I dig into every day.  All of us who loved him are blessed to know a special angel in heaven we call Aaron.

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.