Digesting the Diagnosis
Every mother remembers the day she gave birth to her children. There are certain triggers in life that take you back to that exact moment of bringing a baby into the world. Maybe it is a smell, a sound, a feeling, or something else that flashes that memory into play, and you are watching it all over again. I wish I could say my birth experience for my first born was positive and amazing. I wish I could gush about how we bonded after delivery, and I brought him home for a perfect postpartum experience. Unfortunately, life doesn’t always happen that way.
This is my story of how I gave birth to my son, and then discovered he has Down syndrome.
We had just decided on his name, and I was feeling positive he would flip into a head down position at our 37th week of gestation. I had been laying upside down for days, with frozen peas on my belly, right where his head was. I was trying anything that would make him flip! I tried acupuncture, yoga, meditation and more, over the last couple of weeks. I wanted to experience natural, vaginal childbirth, and it was looking like a c-section would be in my future. He was not budging from this breech position.
With his name on my mind and a smile on my face, I crawled into bed, and I felt a sharp pinch in my vagina. My water broke and gushed out on the floor. Excited and nervous, we called the doctor, who told us to get to the hospital in the next hour. Our doctor wasn’t able to turn the baby into a position for vaginal birth because I had lost too much amniotic fluid. So, we prepared for a c-section.
This became a traumatic event for me because I was so upset about not being able to deliver vaginally. I wouldn’t be able to experience what I had imagined. My birth plan had changed, and I was not transitioning well into plan B! I wouldn’t get to have my doula with music, dimmed lights, and my husband wiping my forehead with every push. For some reason, I had equated vaginal delivery to exceptional motherhood. I had related that act to being a strong woman, like my mother, who had given birth to seven children, naturally. I had worked myself up into such a disappointed state that I forgot about the wonderful happiness one should be feeling with a new baby. I cried, sobbed really, and even hyperventilated a few times. Nurses needed to calm me down so I could get through surgery. Just as he was delivered from my numb abdomen and held above the blue paper curtain, I felt the complete opposite. I was overjoyed and relieved that he was healthy—and secretly happy that he had a perfectly round head.
The APGAR score was a perfect 10, he seemed fine to everyone. They swaddled him and off we went. After I was stapled together, they brought me my son, so I could nurse him. He wouldn’t open his eyes or mouth. We tried several more times and then we agreed he could have some formula if he needed it.
Later we tried again, but he couldn’t purse his lips around my nipple. He couldn’t make a seal or suckle. His mouth just gaped open. More formula. A few more tries that night and a visitation from the lactation specialist. I was introduced to the pump, which I couldn’t understand what to do with, in my anesthesia fog. I cried because I couldn’t “fill” the bottle. Of course, the nurse said I gave the perfect amount for a baby just a few hours old! This all felt so different from what I expected a birth experience to be.
Several more attempts to nurse left me feeling inadequate. I was producing milk, but he wasn’t suckling. I pumped to get the liquid gold so the nurses could feed him a bottle. I heard a nurse say he is “floppy” to another nurse. That word meant nothing to me, so I let it go.
My husband went home around 5am for a little sleep. The doctor came in around 8 am to wake me and ask if I would give permission for my son to have a chromosomal blood test. I tried to sit up, when a sharp pain hit my gut and I remembered I just had surgery. “Why?, I asked the doctor. Do you think something is wrong with him?”, I asked. My obstetrician said, we can’t be sure until the test results, but it could be a chromosomal disorder. All I could think of was Down syndrome! I have no idea why that came to my mind. I never met anyone with Down syndrome, never even knew anything about it. Why would that syndrome come to my mind and no other disorder?
And just like that, I questioned why we didn’t see any markers in all the tests I had. I asked, “How could this be happening? I should have had the amniocentesis.” My doctor sat closer to me on the hospital bed and patted my knee. He asked, “Would it have made a difference?” I knew what he meant, instantly. My husband and I had been trying to conceive for three years and even had artificial insemination twice. We had just given up and started the adoption process when we became pregnant. My doctor knew how much I wanted this child. He was right, If I had known I was carrying a child with an abnormality, I would have kept it because I wanted a baby, any baby, that badly.
I did have all the tests that were available in 2004. My doctor and I chose to not have amniocentesis because of my age and the risk to this unexpected pregnancy. Not one of the other tests revealed any markers for Down syndrome or any other abnormality. I had the most amazing pregnancy. I was healthy, happy, and loved being pregnant! I worked up until 35 weeks. I never suspected anything.
I dreamed of my little rocket scientist.
So, I signed for the blood test, and we waited seven days for the answer. It was the longest week ever! We brought the baby home and even met with a representative from the local Down syndrome support group. Our son was experiencing jaundice and had to be wrapped in a bilirubin blanket. A nurse came by daily to check his blood. I barely slept, and not due to a newborn in the house. I read all the books in the New Parent Kit, which was a gift from Manasota BUDS (Bringing Up Down Syndrome), and everything I could online. I obsessed about how this could have happened. Was it my fault?
I pumped breast milk every two hours, he barely ate and never cried. I walked around in a confused daze. In that time, I felt closer to my husband than ever. He was my rock and handled the possibility of a “not perfect” child like the most amazing human. His positive outlook on life was my life raft. He assured me that no matter what the test revealed that we would love and care for our baby. He was right. Of course, we would.
I feel very grateful for his love and support at that crucial moment because I know now that not all mothers experience it when they must share the news with their partner. The moment I had the blood test in the hospital, I cried. My roommate, who just had a baby too, came to my side and asked if she could call my spouse. I let her, and I can only imagine his thoughts after receiving a call from a stranger about his wife sobbing in the bed next to her. He raced to the hospital and held me, reassuring me that our baby is perfect how he is and we will be okay. I will never forget that feeling of the earth falling away from my feet. The loss of control was devastating.
Back at home, we stared at our son for long periods of time, examining all his parts. We made excuses for the now noticeable markers and said things like, “he doesn’t look like he has Down syndrome”.
Four days passed and I fell more and more in love with this little baby. We were in a sweet routine and really bonding now. I knew deep down inside me that he had Down syndrome, even without the test results. I was digesting this diagnosis before receiving it. I didn’t care. He looked and behaved like all other babies. I just felt like this was meant to be and it would be our duty to raise him, love him, and show him the world.
We called the photographer to set up a photo shoot. Since I was a planner, I had arranged for this 1-week-old photo shoot to happen once he was born. We decided to go ahead with it despite the news we were awaiting. It was day six at home with the baby and the photographer was setting up his equipment on the lanai. It was a good day.
The phone rang. It was my doctor with the results a day early!
I felt relieved to get the results. I accepted it quickly and my husband and I had a moment to digest that.
Then, we proceeded with the photo shoot. I think the picture tells that story of how we must have been feeling, holding our son with Down syndrome.
Thanks for reading my story. I have always wanted to start my own blog to share experiences and ideas, but didn’t know where to start. When I came across The Treasure Map to Blogging Success, I was able to follow a step-by-step guide with very little technology experience.
