When our son, Sean, was born with Down Syndrome it felt that life as we knew it came to an end. It seemed that all of our hopes and dreams for our new little baby had been dashed … again! Little did we realize at that moment what an incredible gift from God that we had been given!
We had been married for sixteen years when our first baby, Kristen, was born … we could not believe that we could be so blessed! She was absolutely precious and the sweetest little baby. Our life was “perfect,” or so we thought, but when Kristen was nearly three months old we woke up on New Year’s Day and she had died of SIDS (Sudden Infant Death Syndrome). We tried to find some kind of meaning for such a tragic loss, and were filled with bittersweet joy when I became pregnant again the next month … but that pregnancy, and the next one three months later both ended in miscarriages at less than eight weeks.
We thought that we might never be parents again, and never be able to love a baby with such intensity again. We waited for a year to try again and were excited to have another little baby on the way with our first try!
When I was fifteen weeks pregnant I began having contractions and we were so afraid that we were going to lose this baby, too. But I went on bed rest and we made it to nearly seven months with no further serious concerns. But at twenty-nine weeks the ultrasound showed that our baby’s femurs were only measuring twenty-six weeks and we had some concerns that he could have Down Syndrome, also known as Trisomy-21, due to an extra number 21 chromosome.
I am an RN and worked in a neonatal ICU so we were even calling the geneticist at home! But when we told him that my husband’s parents were both short, and that Sean’s head was measuring thirty-one weeks he said that it sounded like we had a healthy baby and to “Relax and enjoy your pregnancy!”
But my husband would watch the ultrasound recording again and again, and I would wake up in the night and hear him sobbing … for Kristen and for his fears about our new little baby. He would say “I don’t know if I can handle it!” He’d voice concerns over how other people might treat our child later if he did have Down Syndrome. I prayed to God that if we were meant to have a baby with Down Syndrome to please not let it be this one, after having lost the “perfect” baby girl … I felt like God would not be “so cruel.”
I knew that 90 percent of women having babies with Down Syndrome aborted them, but I was glad we were too far along to even have that option. I was thirty-seven years old but had opted to skip the prenatal testing for fear of having a “false-positive” on the Alpha-Fetal Protein Test, or a possible miscarriage with the Amniocentesis Test. I was scared but still very hopeful that our baby would be fine!
When Sean was born the doctor laid him on my chest and I was relieved to see his cute little face … I told my husband “He’s not!” as the nurse took the baby over to the care center to dry him off. But our joy and relief were fleeting as the neonatalogist touched my arm and said “We’re going to run some chromosomes … there are some indications that your baby may have Down Syndrome.”
I felt a sudden nightmare dread and disbelief and a brief hope that he was wrong, until the doctor handed him back to me and I instantly saw all of the characteristics of Down Syndrome that I had not seen at all when I first saw Sean … he had very floppy muscle tone, short hands with an almost straight line across the palms, some thick, extra skin at the back of his neck, and the slightly slanted curve to his eyes. I held him close and said “I’m so sorry!” to him and feared how my husband Edward was going to respond. I was afraid that he would back away and not want to hold him, but when the nurse handed Sean to him he held him close and wept. Everyone in the room was crying and everything seemed surreal … it was a moment in time that just stopped! We had plans for Sean to be on a home monitor to watch his breathing and his heart-rate because of Kristen dying of SIDS, but it crossed my mind that maybe we should just skip the monitor and let him go, too, since he wouldn’t have much of a life. My husband is a wedding photographer and had to leave to go do photos for a wedding, and when everyone had finally left the room and Sean had gone to the NICU to be monitored I cried with sobs as deep as when Kristen had died! I didn’t know I could cry so hard, but the sobs came from the depths of my soul. Soon after that the door opened and it was the pediatric cardiologist … he had come in to see another baby in our NICU and had already done an echocardiogram on Sean. He told me that Sean’s heart looked very good and that he had a small VSD (a ventricle-septal-defect) that would probably close on its own by the time Sean was a year-old. The cardiac part of Down Syndrome can be very serious and can often-times need open-heart surgery to be repaired … that part hadn’t even crossed my mind yet! So that was a brief “light” of information that helped the overall feeling of our baby’s life being “over” before it had even started!
Part 1 | (Part 2)