November 11, 2007
A whirlwind of activity followed the birth. Rebecca and Lars were born with their names picked out. MW,
Within a very short time a nurse came and escorted the three of us out of the room. She pushed
The Neonatal ICU was like something out of a bad science fiction movie. Enclosed bassinette-like structures were set in rows with glowing panels for monitoring equipment attached to each one. Some of these grotesque enclosures were accompanied by parents, whose dismal expressions mirrored the turmoil I was trying to hide. MW and I were instructed on the procedure for gowning and gloving before entering the room, then, so attired, were led to the hard plastic bubble encasing our son.
He lay on his side, naked except for a diaper, with heat lamps shining down on him. I had been prepared for a horrible sight, instead I saw my son, sealed away from me by a thick layer of plastic. Even asleep, his tiny face was drawn in pain and misery, and my arms ached with the desire to hold him and comfort him. Instead, I was shown a hole in the side of his box that I could put my hands through and just touch him. It wasn’t enough. MW and I were allowed 10 minutes, then escorted out and told to come back the next day.
Late that afternoon, a physician introduced himself as the neurosurgeon who was going to be working with our son. “The baby has a birth defect called Spina Bifida, with a myelomeningocele.” He called our son “the baby”, and spoke as if he were talking about a block of wood, not our living, breathing child. “The spine did not form correctly and the nerves grew out of the spine instead of into the legs. The red bubble on his back is a sack of spinal fluid and nerves. Some parents elect to have a surgical procedure done to close the hole the nerves grew out of.” I had no idea what Spina Bifida was, had never heard of it. But apparently there was an operation to cure it! I was so relieved I was ecstatic, until he continued. “If the hole is not closed, the baby will die, which is an option many parents take. If you decide to go ahead with the operation you should know what life will be like for the child and for you. He will never walk and will probably be retarded. He is paralyzed from the waist down, so he will never be continent and, if he lives, will be in a wheelchair all of his life with a urine drainage bag by his side.”
I glanced at MW and the look on his face tore at my heart. Nothing could be accomplished in the presence of this cold, distant doctor. “We need to talk it over” I said. “I’ll be here for another hour,” the doctor said, “and I’ll need to know your answer before I leave.”
That horrid man left our room and we grabbed for each other and held on. For a short time the world consisted only of the comfort we provided each other, but that luxury was one neither of us could afford. As we parted I saw the tears on my face matched on his.
“Lars is a person, a real person, and he looks like my dad.” MW said.
“That doctor can not predict his life or his abilities,” I said. “With our help he can create his own life.”
MW agreed. Discussion over. We were going to have the surgery done and were firmly committed to doing everything possible to give him whatever he needed to live a full life.
