Ever had one of those moments when time stands still, and you know your life is about to change? I was 30-years-old, my stomach cut open when it happen to me. All it took was a whisper: “The boys are fine, Baby B has Down syndrome.” I stared at the ceiling, no response except sudden tears streaming down my face. I never cry. This was suppose to be the happiest day of my life.
I was 20 weeks pregnant with twin boys when my husband, Trenton, and I’s life began to take a tailspin. We had just celebrated Trenton’s graduation from medical school and drove across country from Salt Lake to Omaha to move into a new home, so Trenton could start Family Practice residency. It was sweltering that summer, in the triple digits, and I was huge. I’d gained 48 pounds already, and my bulging tummy was starting to literally list to the left.
I got a referral to see three Maternal Fetal Specialists at the University of Nebraska, the best research hospital in the state with a level 1 NICU. I was prepared, or so I thought. The most pessimistic specialist, the one we liked the least, was the first to spy something off-putting. Dr. Jones noted that Baby B’s (Troy’s) sac had polyhydramnios or extra amniotic fluid. No wonder I was so huge! More troubling, they began to suspect that Baby B had esophageal fissula, and could not swallow. We spoke with a neonatal surgeon, who reassured us that prenatal predictions like this one rarely came true. My mom came into town and I got an MRI.
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The radiologist noted nothing unusual. By week 32, my polyhydramnios had vanished. We took a collective sigh of relief. May be everything would be fine, but one of those 3D ultrasound pictures was bugging us. We laughed with friends that babies look “weird” in those pictures, and they agreed. But then Trenton mentioned Down syndrome to the doctors. Two out of the 3 specialists said the probability was very low, and nothing indicated a diagnosis. I was only 30 years-old after all (not realizing that 80% of women who have a child with Down syndrome are actually under 35). Dr. Jones, Mr. Pessimistic, said it’s a real possibility and would be the worst outcome. Looking back now, I realize so many doctors are not up-to-date on progress in the world of Down syndrome.
One brisk October afternoon we went apple picking, by that night I had contractions. I wasn’t due until November 11th, but I was already 35 1/2 weeks; pretty good for twins. I tried unsuccessfully to sleep through the early contractions. I wanted to deliver naturally, and I tried for 12 hours total. Guess who greeted us at the hospital when we arrived? Mr. Pessimistic, with a chief resident who seemed eager to practice her operating skills. I pushed and pushed, got an epidural, was fully dilated, and pretended to push some more. But honestly I couldn’t feel much after the epidural. They said Baby A (Hunter) was in distress, so to the OR room we went. Soon I was cut open and before I knew it both babies were whisked away before I even got a look.
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Trenton ran to the boys’ side, and I was left with an eery silence. I didn’t know what was normal when it came to childbirth, and especially C-sections. Mine was not in many ways. I didn’t find out until later that day (may be the next day?) that someone cut my bladder during the operation, which explained only a third of the eery silence. The other part was Hunter, who took longer than usual to take his first breath (may be he was trying to quiet the storm about to hit). The last part was Troy of course. Trenton says he knew as soon as he saw him. Textbook case: the eyes, the palmar crease, he just knew he said. He broke the silence with that whisper in my ear, and I could hear his heart break.
I wheeled into the NICU every two hours to learn to nurse my twin boys; catheter and urine bag attached to the wheel chair. Thank God for those momma hormones; they kept me sane that first week. Trenton was a wreck. He couldn’t accept what had happened. He was in a very dark place, even though we learned both boys were healthy. Troy did not have Esophageal Fissula. In fact, he had none of the common health conditions that plague a large percentage of babies with Down syndrome. Still, they made us wait in the NICU for six days for the results of the official test that would diagnose Troy. During that time we never hear a word from the chief resident, whom we suspected had cut my bladder. Dr. Jones had seen us, and he apologized for what happened.
Mr. Pessimistic had been at least partially right all along, and although I still didn’t like him, I respected his apology and professionalism. It was on one of the last days in our week long NICU stay that affirmed what a nightmare this experience had become. Trenton’s parents were making their daily visit to the NICU, I had just finished nursing and was holding one of the boys, when the director of the NICU arrived. He plopped down in MY wheelchair, popped a wheelie (seriously, people) and said: “Yep, Down Syndrome.” We all just stared in awe! Of course, we all knew Troy had Down syndrome. He was relaying the results of that official test, but the tone and manner in which he did it was jarring. Trenton asked him to leave. And then demanded that we all leave the hospital if there was no medical reason for us to be there.
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The day we left that deep, dark cave they call the NICU was an exceedingly gorgeous fall day. Too bad my mood didn’t match the weather. Trenton and I swapped emotions. He jumped into action, and I started down the sad and angry road of grief. Trenton and I took longer than some families to come to terms with Troy’s diagnosis. The first months, even year was full of times of despair. I wondered if Troy would always be excluded, different. Trenton despaired that his boys would never play together. It wasn’t until Troy’s first smile, at 3 months that we took a small sigh of relief. May be we could make this work. By the second year, our despair turned to more and more moments of joy as our boys began playing together. Yes, some of our days were filled with therapy sessions and medical specialists, but their were so many more moments of simple joy.
Of course, having twins can be a blessing and a curse at times. I used to compare my boys a lot in the beginning. This was actually helpful in some ways. I was a first time mom, so I whenever Hunter reached a milestone I began working on that developmental milestone with Troy. And as the boys developed their own identities and personalities it became easier to accept them as individuals. It’s hard to believe that they’re now 4-years-old, and are more alike than different in so many ways.
They go to the same inclusive preschool class, both can write their name, read dozens of sight words, count 1-to-1 correspondence to 20, and play t-ball on the same team. Troy has an affinity for music, reading Dr. Seuss classics, and giving the world’s best hugs (as my husband defines them). Hunter is a fierce protector, and at the same time exceptionally empathetic. Most important, the boys are best friends, and lean on each other for life’s ups and downs. Although Troy continues his thrice weekly therapy sessions in speech, PT, and OT, most days he is not the center of family life. He now has a 18-month-old baby sister, Cora, who’s happy to be the center of attention :-).
Down syndrome has become kind of like the background music of our life. It doesn’t define us, but it’s always there guiding us. It forces us to see what’s truly important in life: respect, happiness, and love.
Looking back now I realize how far we’ve come. I can’t imagine life without Troy. He was worth every second of the seemingly small hardships we’ve been through. He’s made us a unique and unusually strong family unit. He’s taught us what life is all about. And although I’ve yet to have “the happiest day of my life,” I’ve had countless magical moments with my family that have added up to true joy!
This post was originally shared on www.cedarsstory.com. Visit this amazing blog for other inspiring Down syndrome birth stories.
