Posted by Nancy Spiegel. Written by Jennifer Bronwell.
Jeff and I were newlyweds in our mid to late 30s and we had decided that we wanted to start trying to have a family right away. We were blessed with conception almost immediately. We were working with a midwife, planning home delivery. We had taken Bradley child birthing classes and we had declined genetic prenatal testing. Our beliefs are that we wouldn’t alter the pregnancy. We had done everything “right”-no caffeine, no alcohol, acrylic nails removed, no fast food, tons of prenatal vitamins….
I had been experiencing what I thought were Braxton Hicks contractions. One weekend, I experienced more cramping than usual. We had been in constant contact with our midwife who recommended that if symptoms worsened, we may need to go to the hospital to get “checked out.” Since it was the weekend, and I dreaded a trip to the emergency room, we decided to wait and see. Certainly we weren’t looking for signs of labor as I was still in my second trimester. As the discomfort continued, we finally decided to go to the hospital. The emergency room asked me how far along I was and I told them 27 weeks-I was asked to proceed directly to the labor and delivery unit. So we walked upstairs and upon examination, the triage nurse informed me that we were going to have our baby that day.
We met with the neonatologist who described the treatment plan for a newborn whose lungs aren’t fully developed. Everything was happening so quickly. We had arrived at hospital shortly before at 1pm on a Sunday and Noah was born at 2:51pm, 13 weeks early.
Although he was a very healthy weight and height 3 lbs, 15 inches long, his respiratory system was clearly not equipped for life outside of the womb. While the nurses were cleaning me up, my husband stood watching in terror as the neonatologist and nurses resuscitated Noah. I later learned how traumatic that was for him. When we had woken up that morning, the last thing we thought is that we’d be giving birth to our child. So many emotions transpired, joy to know we had a son, sadness that we couldn’t hold him, concern about his breathing, shock about all that had just transpired.
This began our journey of a 99 day stay in the neonatal intensive care unit (NICU). Shortly after Noah was born, the neonatatologist informed us that he suspected that Noah had Down Syndrome. In less than 24 hours, Noah had already had dozens of tests, most of which came back negative so we rejected the doctor’s suspicions, and decided to wait until the final kariotype results were available. It was such an emotional roller coaster and we learned not to react to what “might be” true, instead clinging tightly to what was certain-that we loved our son unconditionally, that he was receiving excellent care and that, other than his lungs, he had minimal complications.
We received official conformation of Noah’s genetic test results 7 days later. Noah was, indeed born with Trisomy 21. My parents and sister had since flown in from out of state. Jeff’s sister and brother in law were all present for a family meeting that Jeff and I held that same day. I remember being so proud of my husband as he told our families (and his parents later via telephone) about Noah’s diagnosis of Down Syndrome. He displayed such strength, such compassion, such unconditional love. My background is in healthcare so it was usually me leading a family conference and dealing with all of the emotions. Jeff was rock steady, firm in his commitment as a father to Noah and to me as my husband. We let our family know that we felt honored to be chosen to be Noah’s parents. I remember tearfully telling our families that “Until my dying breath-I refuse to have people put limits on Noah.” That sentiment holds true today.
During all of this, we still hadn’t been able to hold our son. Nine days after he was born, we got to hold our son for the first time. I’m not sure who has greater joy, the parents of a healthy newborn holding their newborn child fresh out of the womb, or the parents of a premature infant who had to wait days to hold their precious son.
As the NICU stay went on, the diagnosis of Trisomy 21 was hardly relevant. Noah’s lung and respiratory issues became focus of our 99 day NICU stay. Towards the end of his stay (the NICU often keeps premies until their full term due date), Noah had two back to back infections of Group B Strep and sepsis that delayed his discharge home even further.
At last, the magical day arrived and we were able to bring Noah home-still on oxygen-and monitors. What a thrill. Each day, I would pull out developmental books and correct for his age (subtracted 3 months) to learn about what he would be doing next. I quickly learned that there wasn’t a developmental chart that existed for a child born 13 weeks early and with Down Syndrome. Noah definitely does things in his own time which often makes the achievement so much sweeter. We still had lots of diagnostic tests, eye glasses, a diagnosis of conductive hearing loss that was later resolved, and craniofacial reconstructive surgery-all of which had NOTHING to do with Down Syndrome.
All of the medical stuff and the extra chromosome doesn’t matter-Noah is the light and the joy in both Jeff’s and my lives. We are blessed with supportive family and church family who are on this journey with us as well.
We believe in the best for Noah and will advocate for the support of therapists and teachers who seek to maximize his potential rather than minimize his achievements. We are fortunate to have a wonderful Regional Center Service coordinator who is a great advocate for Noah. She has sought out some of the top therapists in the community-all whom have contributed greatly to Noah’s development and achievement. They too have become a part of our extended family and it is fun to watch them delight in Noah’s progress right along side of us.
As I read about Down Syndrome and talk to almost every parent of a child born with Down Syndrome that I see, I have learned to discern between data that is decades old and focus on what is happening today for children born with Down Syndrome. The blessing of early intervention services that is sure to provide many more opportunities and more outcomes than those who are 20, 40 or 60 years older. We used to wonder, will he be in mainstream school, will he marry, will he have a job, and will he drive? We now have new dreams for Noah-it is no longer a question of will he, but a question of when?
We have been warmly greeted by other parents of children with Down Syndrome. We feel a kindred spirit and have been welcomed to a very special club. Noah has really come into his own-he is very expressive about his likes and dislikes which is a very good sign. Noah’s smiles, “talking” and giggling light up our home each day. He is less mobile than his peers but Jeff and I remain confident that he will continue to achieve on “his” schedule. We have learned that each child is unique and different. This is not unlike the world at large where many individuals, typical and non typical, are as different as night and day. Jeff and I can’t wait to see what interests Noah has as he grows up-will he like music, swimming, soccer, theatre, or cars?
Noah is a big brother to typically developing Tanner, despite Noah’s journey, we also declined prenatal testing for this pregnancy as well. We believe that life is sacred and a gift from God. Noah is our warrior, our champion, our gift from above, our cherished and beloved son.