As part of our 2013 Mother’s Day campaign, we’re sharing stories to uplift and inspire moms who received a prenatal diagnosis of Down syndrome. Enjoy!
Our story began the day of our fourth child’s 20 week anatomy scan. We had declined all early testing each pregnancy, but because of previous preterm labor issues, we had regular ultrasounds to see our little bug. This had been the easiest pregnancy of all the kids, and being seasoned parents, I didn’t reschedule our ultrasound when we discovered my husband had a conflict that day. I was anxious to find out whether we would be evening up the gender war or adding an even greater advantage to the boys’ side. I planned to go buy a gender specific outfit and surprise dad afterwards. I dropped all the kids off and happily arrived to my appointment.
I’ve had lots of ultrasounds throughout my pregnancy lifetime, but it is still incredible to me to see a life we had created growing and moving inside my body. Hearing the heartbeat is one of the sweetest sounds in the universe. My ultrasound tech was wonderful and explained all the bits and pieces, although not a lot of explanation was needed in the gender area. After having two boys, it was confirmed quickly that my daughter would have 3 brothers! After some shifting around (more than usual) the tech said she got what she needed and sent me to wait for the rest of my appointment with my doctor.
I had already begun to feel a little uneasy; something just seemed off. When the doctor walked in, I knew something was up. He did his regular checks and then asked me to join him on the chair to review the ultrasound. My stomach dropped.
Within the next minutes, I heard that my baby did not have a nasal bone and that he recommended that I see a perinatalogist for a level 2 ultrasound. This was a marker for Down syndrome. Everything else looked fine (heart, GI, etc.) as those could also be indicators.
Next, I drove to my husband’s office to tell him the news. Oddly, as I cried during the 30 minute drive, I was most worried about the stigma around Down syndrome. How would he be treated? Would he ever fit in? What would others say and do?
My unsuspecting husband joined me in the car; I couldn’t bring myself to walk in. I told him another son was on he way and then I dropped the bomb. He comforted me and reminded me that our baby would be our baby no matter what. If I wanted more information, schedule an appointment. He was a rock of strength and his faith, unfaltering.
Feeling more at ease, I went shopping for baby boy clothes. Retail therapy was in order.
I scheduled the appointment and it would be 2 weeks later. What?!? Those were a long 2 weeks. During that time I googled as much as possible about Ds and found the good, the bad and the ugly. I reached a point where I could no longer see information. This is also the time
I began lurking on the Ds and Ds pregnancy boards on Babycenter. It was really helpful to see photos and hear stories and questions from other moms. Finding that site allowed me to calm down and carry on during the dreaded wait time.
Before the appointment with the perinatologist, I believe I already knew what our future held. I had already decided that I would not have any invasive testing. So, when 2 other soft markers were noted, I jumped at the chance to take the new Verifi™ blood test which would give us an answer with 99% accuracy in 8 days. 8 days.
I tried to keep extra busy during that wait and tried to stay off Google. But, by the time the genetic counselor called with results, I was convinced that we already knew our little one would be extra special. The results confirmed my instincts on a Wednesday afternoon. I cried as a I called my husband to tell him that our newest son had three copies of the 21st chromosome, but this time it was driven by relief and content, not fear or anxiety.
That night, I spent more time with the BabyCenter groups and Downsyndromepregnancy.org. These truly became lifelines to me throughout my pregnancy. I felt like I no longer fit in with my birth board. We chose to not tell people other than family and close friends until our little one arrived, so that also limited my support. I had sound research and real-life experience at my fingertips, and it was incredibly comforting during this challenging time. The BabyCenter board was also the starting point for the Facebook group of moms I have grown to love and admire. Over 100 moms new to the journey of DS living life together online; it is a beautiful thing! Without the BabyCenter Down syndrome boards, I cannot imagine how I would have come through all of this.
Owen Henry Jacob was born at 38 weeks, 5 days. We induced because the doctors believed the fluid around his heart was increasing. We welcomed our precious son on December 28, 2012. He was 7 pounds, 7 ounces and 19 ¼ inches long. And he was (is) perfect.
He was a strong nurser right away and was cleared by the NICU staff and doctors. Hours after he was born, he was moved to the NICU due to pulmonary hypertension. He started on oxygen and was doing great after a saline/blood exchange. That night he was cleared by the pediatric cardiologist (no fluid at all!). He ate very well, and after experimenting with oxygen levels, it was decided that we could bring him home with oxygen on day 6.
Today, Owen is 4 months old! Time really does fly. He is almost 16 pounds and has started rolling from back to front. His smiles and giggles are tough to capture, but they light up the room. We have had 2 ABR tests for his hearing, and Owen will be getting temporary hearing aids this month. Once his ear canals are large enough, tubes will be placed and we believe that will solve his hearing issues too.
His older siblings are in love and so are we. We are so blessed with our family of 6. I am still basking in the newborn glow (or maybe that’s sleep deprivation?!) and find solace with my other moms who have kids rockin’ the extra chromosome. The BabyCenter website and downsyndromepregnancy.org filled a huge void in my life during the very difficult time from diagnosis to birth. I am forever indebted to the women who began it all and continue to support so many moms (families) each day.
Read more from Jenny at her Blessings Beyond the Ordinary blog. Thanks Jenny!