An Extra Chromosome
Panorama, SA, Australia
From New Beginnings, Vol. 25 No. 6, 2008-09, p. 20
I remember the night my son was born. I remember my tears drenching both our faces. I remember the nurses prying his tiny body from my arms, crowding around him, blocking me out as they laid him in the transport crib. I remember being in a haze from medication and not knowing if I would ever see him again. I remember thinking that one of the most joyous moments of my life had become a nightmare.
What the neonatologist and pediatrician said was, "We think your son might have Down syndrome, and a major life-threatening heart defect. He isn't getting enough oxygen, and we need to transfer him to Stanford, tonight." What I heard was, "Your son is retarded. He'll never walk, talk or grow out of diapers. He may not even recognize you, and he is condemned to wearing brown polyester pants and shirts buttoned up to the collar, having a pudding-bowl haircut, buck teeth, a lolling tongue and a stoop to rival the Hunchback of Notre Dame." That was the stereotype I had of people with Down syndrome.
For the next seven days, as I waited for the specialists to confirm or deny the presence of the extra chromosome, I alternated between reassuring myself that he did not have Down syndrome and hoping that if he did, he would die before I had to bring him home. If he died, I would get sympathy for having lost a child, and would not have to deal with the trauma.
This was not the Ben I had dreamed about those past eight months. The baby I was expecting would have his father's height and musical talent, my outgoing personality and blonde hair, his father's freckles, and intelligence to rival either of us. No. This infant who was born to us was not part of my perfect family-to-be. How could we go camping and backpacking? How would he learn the French horn, or play competitive basketball or scare me witless when he learned to drive?
During pregnancy, I had been determined to breastfeed, but in the hours after my baby's birth I thought that was impossible. He was more than 40 miles away. I could barely sit in a car, let alone drive. The nurses brought me a mechanical breast pump. I guess they showed me how to use it, but I just ignored it, begging that the fog of pharmaceuticals and some sleep would bring me a new day and a nurse's apology that there had been a mistake -- this perfect little baby was my newborn, not that other one.
The next day I awoke to no newborn, no husband, no friends, and engorged breasts. I was shown, once again, how to use the pump. My father arrived with a bottle of champagne and a video camera that was sent straight to Stanford to film the first child of a new generation in my family.
The pump became my mission, my only focus in a world of desperation. What else could I do? At least I could pump, right? The baby needed breast milk, and word from the nurses at Stanford was that he needed my colostrum, that liquid gold. I followed all the directions. I sat in the hospital cafeteria, weeping, forcing myself to eat the meals that I was told would make good milk. I pumped every three hours, round the clock. I started to let down when I heard a lawnmower, or even a chainsaw. It wasn't natural. It wasn't normal. Our freezer held enough milk to make quiche for an army.
Yet in the end it was worth it. Ben did learn to breastfeed. It took a team of professionals, a lactation consultant, occupational therapist, breastfeeding support group, and my mother to get us there. I remember yelling and hanging up on a nurse in the neonatal intensive care unit who fed Ben from a bottle before I had a chance to try breastfeeding him. I bargained for Ben to be sent back to our local hospital.
But we did it, even as I was still grieving the little boy I had lost. The karyotype showed the infallible evidence that every single cell of my baby's body contained an extra chromosome, that my baby did indeed have Trisomy 21, Down syndrome.
I remember when I truly felt that Ben became my son. He was three months old when I said "I love you" to him, and it wasn't lip service. It wasn't my duty and I wasn't just trying to convince myself.
At six months, breastfeeding became a joy, and at 10 months, Ben's first success at sign language was a sign he invented, asking to breastfeed. We continued for two and a half years.
My journeys of breastfeeding and of acceptance and consummate love are parallel paths. Both began with duty and powerlessness and both ended with pure joy. Now, at eight years old, Ben has been camping nearly every year of his life. Our hikes are slower than they used to be. He tells me that he loves me, many times every day. He wears trendy clothes, has lovely teeth, and an exceptionally cute haircut. He likes to compete with his brother on who can pee the highest on a tree trunk and he only sticks out his tongue to be rude. He doesn't have his father's height or musical talent, but he does love to sing and dance. He is more outgoing than I ever could have imagined. He has my blonde hair and his father's freckles and an extraordinary type of intelligence that truly exceeds any I've known.
Note: Sam Paior is the mother of two boys, one with an extra chromosome, and one born far too early. She is now a volunteer breastfeeding counselor at her local hospital and treasures time with families whose children were born early or with special needs. As a parent who has "been there," reaching out to these families and supporting them makes her feel good.