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Playing in the Game of Life

Susan Carmichael
Miami FL USA
From NEW BEGINNINGS, Vol. 24 No. 1, January-February 2007, pp. 10-11

At the time of the birth of my first child, I became involved with La Leche League. It was my lifeline to confidence and sanity. At the time, I was a native English speaker alone in a Spanish speaking country. When my daughter was born, I had no idea how long I'd breastfeed. Maybe three months, maybe six. My daughter breastfed for four-and-a-half years. I was determined to offer the same gift to my second child.

The hope for a natural birth with my second child ended when I went for an ultrasound in my seventh month of pregnancy. The test confirmed that I had too much amniotic fluid, a condition called polyhydramnios. My baby, however, looked completely normal: head size, spine, limb, and heart development -- everything was right on track, except for this one thing. It appeared that my son, Addison, had two stomachs. My birth plan had changed; my life had changed. There was a 30 to 40 percent chance he had Trisomy 21 (Down Syndrome). Without major surgery, Addison would not survive.

The second pouch above his stomach was called a "double bubble." This bubble indicated duodenal atresia: an anomaly of the small intestine. A second ultrasound confirmed the "double bubble," but neither test revealed any sign of Down Syndrome. I shelved thoughts about it and focused on the high probability that my child would need major surgery in the first few days of his life.

At 37 weeks, I went into labor. I pushed, but my baby wouldn't descend. I awoke from an emergency cesarean to find out that Addison had Down Syndrome. With all we faced, I never considered that my son would have trouble breastfeeding until I heard comments from other people: "Babies with Down Syndrome have a hard time latching on...he won't be able to breastfeed once he has a bottle...are you sure you have enough milk?"

After almost five years of breastfeeding my daughter with confidence, I began to doubt my body and my ability to breastfeed my son. I became more determined to succeed. My baby lay in an incubator; our only contact was through holes in a plastic box. I knew I could also touch him with my milk. I become a diligent warrior for my son and my principles. My child was going to get my milk.

I started using a breast pump. When I was released from the hospital, I continued to pump. Every morning I brought a fresh supply to the hospital for Addison. In the hospital, there was no room to pump in comfort and privacy, so I huddled in the corner of a supply room every three or four hours to express my milk.

My son survived major surgery with flying colors. His condition turned out to be a differential diagnosis called annular pancreas. (During development in the womb, a piece of the pancreas had wrapped itself around the first part of the small intestine.) A week would pass until Addison would ingest my milk through a tube in his throat. A few days later, he would drink a small amount from a bottle. The doctors increased the quantity of milk at every feeding. Once they thought his digestive track was stable enough to handle unmeasured quantities of milk, it was time for him to try nursing at the breast.

I sat in an orange recliner in the chilly neonatal intensive care unit. I took my breast out from under the surgical gown. I hadn't held my son often. He had so many tubes and cords attached to him, I was terrified I might pull one out and cause more pain. Addison latched on as if he'd done it before. He drank for a long time. I suppose this would've been the time to cry, but my tears were stuck. I wanted to shout instead. I wanted to tell the world of our victory.

Addison's gross motor skills do progress slower than other children's, yet he is an alive and vibrant toddler in so many other ways. He loves to stick his tongue out and blow to make the "raspberry" sound. Whenever someone asks him a question or says hello, he makes this noise -- it's his exclamation point. Then, he'll often slap his hand down on the table or floor. If music plays, he'll clap his hands. I can tell that Addison has a lot to say.

At 15 months, he is still breastfeeding. Down Syndrome is a part of our existence, but it sits on the sidelines while we play in the game of life. I credit much of this to breastfeeding.

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