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Story of our son Sean who was born with Down Syndrome. |
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Expect Dreams Tags: .By Debbie Moore. 0 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 just under 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 so 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. Then 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 # 21 chromosome. I am an RN and work 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 pretty 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!” However my husband would watch the ultrasound recording again and again, and I would wake up in the night and hear him sobbing … for the devastating loss of Kristen and for his fears about our new little baby. He would say “I don’t know if I can handle it!” and voiced 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 abort them, but I was glad that 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 tests, 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!” and felt overwhelming relief as the nurse took the baby over to the care center to dry him off, but our joy and relief were dashed almost immediately as the neonatalogist touched my arm and said “We’re going to run some chromosome testing, there are some indications that your baby may have Down Syndrome.” I felt an instant feeling of horror, then 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, thick, loose skin at the back of his neck, and the obvious slant to his eyes. I held him close and cried out helplessly “I’m so sorry!” to him and had a horrible dread about 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 totally surreal … it was a moment in time that seemed to just stop! 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 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 us feel a brief glimmer of hope and lightened the overall feeling of our baby’s life being “over” before it had even started! The next concern I had was how my mom was going to handle our news … She was making the 3-hour drive down from her home and didn’t know anything yet! She had been absolutely crazy in love with Kristen and had an extremely tough time too when Kristen died. My dear Mom had lost my father suddenly at 56-years of age only 2-years earlier (after being married to him for 38-years) and Kristen had given my Mom a totally renewed happiness in life When she walked into my room hours later I was holding Sean in a sweet little outfit Kim had gone to the gift shop to buy for him and his Grandma was holding an “It’s a Boy” balloon and looked incredibly happy … she said “Ooh, what do we have here?” and I answered “We have a little boy, but we have some problems.” She said “WHAT?!” as she reached out to take him into her arms, and I said, “He’s a little Downsie”, as I waited fearfully to see her response, however she hugged him close and said “Oh, but he’s sooo cute! Who couldn’t love him?!” And I will cherish my mom forever for that moment, because it turned the whole scary experience totally around! A short while after that I noticed Sean’s skin looking a little blue-grey color and thought he might need some oxygen. I called for the NICU nurse to come and see him … she took him back to the unit and they ran some tests on him, and put him on some IV antibiotics to be safe. His blood was very concentrated though so the neonatalogist put an IV line in his umbilical vein to remove a small amount of his blood and help it circulate better. Sean also had a clubfoot that had sort of taken a back seat in the delivery room, but the orthopedic doctor came and put a cast on to try to help straighten it out, so by now Sean was pretty wiped out and didn’t want to eat. That’s fairly common with little babies with Down Syndrome, so the nurses put in a feeding tube and Sean got his formula while we cuddled him. I was talking to Sean’s Daddy often throughout that first day and we were both bonding more and more to Sean as the day went on … Edward didn’t even tell anyone at his wedding that Sean had been born because he didn’t want to cry, but we were both very upset when we thought he might need oxygen, or possibly had an infection, and Sean was becoming more and more “ours.” When Edward came in after his wedding and got to see Sean looking pinker and cuter, and saw how sweet he was, he was finally able to hold him close, and rock him and smile! My mom stayed with me and Edward went home, and we talked on the phone nearly the entire night! We decided that Sean had come to the right family and that we would enjoy life right along with him as he grew up! We live on six acres with hundreds of cypress trees and an alligator pond, and have a lot of pets and wildlife so it was going to be the perfect place to bring Sean up! And yes it has been! Sean is now 21-years old and the coolest kid in town! He has aan 18-year-old sister "Amy" and they adore each other and tease each other just like other siblings. Sean reads great and loves to play computer and Play-Station games. He runs the remote control and the satellite programming like a wiz. He rode the school bus for years and loves his CD player. He called us the Shrek family for years “because of us living in a swamp.” I was Fiona, Edward was Shrek, Sean was Puss-in-boots, and his sister Amy was Donkey! And as my dear mom developed very advanced Alzheimer’s and lived the last few years of her beloved life with us Sean called her “the Queen” … He would say “Oh Arlene, you are so sweet!”... he called her by her first name because she didn’t answer to Mom or Grandma anymore, but she and Sean kept an incredibly close bond til the very end!! We have taken Sean and his sister on a family cruise every year, and for Sean’s 15th birthday we went to New York City to see Broadway shows! We saw Phantom of the Opera, or as Sean called it, "Fan-Tom of the Oprah", and Mary Poppins. Sean got our whole family the VIP tour of the Long Island Railroad Train and rode with the conductor the whole way in to NYC from Long Island. As a little boy he was on the Ricky Lake Show … he loves Miley Cyrus, Demi Lovata, Dakota Fanning, High School Musical, Hair Spray, Peter Pan, Wizard of Oz, Mamma Mia, and Nick TV… and he can quote most of the scripts for everybody in shows and movies! Sean says “I love that man!” about Jesus, Santa Clause, and President Obama. He still loves Barney and the Wiggles and he is very gentle with babies and little children. When he was is in the ninth grade he said he wanted to be a “baggie” at Publix. He has the biggest heart and gives awesome hugs! Now we are working together with a very cool networking company, a Healthy Aging Doctor, and friends... and sharing our healthy products and business opportunity with nice people!! We are so thankful to have Sean and our life is very blessed, and it is my personal goal to help save the Downsies!! Thank you sincerely, Debbie Moore RN NetworkingByHeart.com IsaBlessing.com |
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