"I would like to breast feed him. The lactation consultant at the other hospital said there would be concern to document his intake and output," I told the nurse.

"Exactly," the nurse interrupted. "So you can't do that."

"But if we get a clean diaper on him now, weigh him, feed him and then weigh him and his diaper after . . . ." I protested.

"No, I am sorry," the nurse said firmly. "Here is the bottle."

He ate a little, was awake a little, and fell asleep a little. He was just so little. It had been over a day since we were together, but it felt like a lifetime. For those few precious moments, he had shared smiles, coos, and soft touches. A couple ounces from the bottle disappeared, which offered him some relief. 

I cradled him, his head nestled in the crook of my left arm. I stroked his head with my right hand. Slowly starting from his forehead, my hand gently smoothed his downy wisps of dark hair. His body responded as he nestled down deeper into the space between my heart and arms. The pacifier bobbed up and down in his mouth furiously as he gently peered at me, leaning his head to the right. I sang softly to him.

We were one. Mother and baby. For just one moment I was confident we were in the right place. With each other.

* * *

On the morning of the surgery, Oct. 4, 2001, I entered through the double doors of the children’s ICU, and saw James lying in a bed some fifty feet away. I wanted to run over and pick him up but I also had to acknowledge that he was in a tenuous position - in a hospital under the care of trained medical providers. This was their arena and I would oblige every request. So, I dutifully washed my hands, as a sign posted outside the ICU requested. 

I was on my way over to greet James when I was met by the world-famous heart surgeon, Dr. William I. Norwood, who was going to operate on my son. My husband and I had met Dr. Norwood a month earlier during a tour of DuPont Hospital, and we chatted with him for five minutes. At that time, Dr. Norwood had not read any of the medical records, so there wasn't much to talk about. And now, moments before he operated on my son, Dr. Norwood wanted to know if we had any more questions.

"What will you be doing?" I asked.

Dr. Norwood told us he was going to cut away the section of James’ aorta that was narrowed and widen it with a patch.

"Is there anything else I need to know?"

"No."

I asked the doctor to pray and told him I would be praying for him. "Thank you," I said more beseechingly than appreciatively as I grabbed the doctor’s hand. I wanted him to understand how important this child was to us.

Dr. Norwood, however, quickly pulled his hand away and, without a word, turned and walked way.

* * *

The anesthesiologist escorted me, my husband and James to the operating room. James was still beautiful, with his full face, distinctively shaped eyebrows, perfect button nose, and pink rosy color.  I brushed his arm and placed my finger in his hands. There was little reaction as he had already received medication to relax him during the procedure. As I left him alone with strangers into a giant room full of equipment, I was suddenly terrified that I was doing the wrong thing.

It just didn’t feel right, yet, I was not medically trained. So I dismissed my instincts and pushed away negative thoughts. This was a time to stay positive and see things through.

* * *

The surgery began at 7:30 a.m. I stayed in our assigned room at the hospital and waited for updates from a social worker. By 9:30 a.m., the social worker called to say "he is on bypass now."

I stopped breathing.

"That's okay," the social worker volunteered. "It's part of the procedure."

Around 10:00 a.m., the social worker called back. "He is off bypass now and they are closing him. We will let you know when you can come see him."

When my husband and I met in the CICU with Dr. Norwood, he gave us a good report.

"You'll be home by Monday, Tuesday at the latest," the doctor predicted. "And he can be playing football when he gets older like any other child."

"So everything went as you planned?" I asked.

"Yes, there were no surprises. He is doing well," the surgeon said.

With a lighter step, I walked back to my new baby. A scar ran down the center of his chest from under his neck to his belly.  A tube protruding from the bottom of the scar ran down the length and height of his bed into a rectangular shaped clear plastic container that bubbled and percolated like an overgrown coffeemaker. Though tjhe tube was mostly clear, I saw an occasional tinge of red. 

My baby’s nose was invaded by a clear tube attached to a clear plastic tube connected to a large contraption that was plugged into the wall. A catheter ran from the diaper barely on him. A white clothespin pinched his finger. A variety of other wires and lines decorated him like an unwilling Christmas tree, topped with a gold sticker in the shape of a heart.

"How is everything?" I inquired to the nurse.

"He is doing great!" the nurse said. "There's a little carbon dioxide retention but nothing we can’t work with."

* * *

I was getting out of the shower shortly after 8 p.m. when I heard a knock on my hospital door. A tall, slender doctor in a white lab coat stood there, his hands clenched by his sides. A young blonde nurse was beside him.

"Mrs. Mannix," the doctor said. "There has been a sudden event."

"What do you mean?" I asked. "What happened?"

"Your son, James, has had a serious event," the doctor said. "It was very sudden."

"Can I see him?"

"It is very serious."

"What happened?"

"It was a very sudden and very serious event," the doctor said. "They are working on him now."

* * * 

When I saw my son, I was devastated. James looked like the dead frog I barely got through dissecting in ninth grade biology.

His arms were pinned down by his sides. His hands no longer clenched. His legs were flopped with the knees facing opposite directions. His head was propped and facing left. His skin was no longer pink. It was a gray, green, hazy sort of yellow color. Instead of being wrapped in tubes and wires like a Christmas tree, he had been tied down after a struggle. He was imprisoned.

The tube once in his nose was tapped forcefully to his mouth; so much so that the skin was pulled open unnaturally. His chest had two tubes protruding now. Only they didn't lie flat like the one earlier in the day. These tubes were much less flexible. They stuck straight up and out from the center of his now-open chest. The only thing between me and the inside of my son's chest cavity was a thick, clear-wrap patch measuring two inches square. Though the tubing was not colored itself, it was filled with red.  My eyes followed the tubing to a larger machine that swirled and churned. It was plugged into the wall less than five feet away.

"So, if we turn this off he will die?"

"Yes," the doctor said. "Right now, we are letting him rest his heart. This is like baby bypass."

* * *

Five days afer the surgery, James began to shake. It was like the shake that accompanied a newborn's stretch except the shaking wasn't quelled by the stretch's completion. He kept shaking. I asked to cover him. I figured he was cold after all those days of lying on his back with nothing but a diaper on.  The staff allowed me to wrap him in a blanket for a while. His body quieted. But not for long. There was a request for a neurological consult and an EKG.

After rounds at 8 p.m., a doctor knocked on my door.

"I did a full neurological exam on your son," the doctor said. He stopped and asked if there was anyone else nearby to keep me company. He was noticeably concerned when he saw I was alone.

"Well, Mrs. Mannix, clearly your son was neurologically sound and healthy at delivery and thereafter," the doctor said. "However, I am very concerned that at some point either during or after surgery, your son suffered severe insult to his brainstem and his cortex."

"Will he crawl?" I asked.

"I am sorry," the doctor said, "but I am seriously concerned about your child's ability to meet more than minimal life functions." 

* * *

James spent five days recovering on a ventilator, which caused complications: tiny pinholes in one of his lungs. I was awakened by another knock on my hospital door; a doctor informed me that Dr. Norwood had decided that James needed more surgery. I wondered why the doctor hadn't asked me before he decided to operate again.

When I was finally allowed to see James on Oct. 12, 2001, I stood there in shock. Just hours before, he was a pink and rosy baby; now, he was covered in purple, black and blue. He was bleeding from an open wound on his right side that was covered with a blanket. His right hand, though clenched again, was perfectly black. He was so swollen he looked like he was nine months old, not ten days. His eyes were so badly swollen he couldn't have opened them if he had wanted to.

Dr. Norwood appeared stunned when I ran into him in a hallway. He tried to escape by walking around me. I stepped in front of him but was unable to speak.

"Norwood?" my husband said.

"Oh," the doctor said. "Did you speak with my associate?"

"Yes," my husband said. "But we need to speak with you?"

"He could help you," Norwood said of his associate.

My husband wanted to know who was supervising James’s care. "And you will be around this weekend?" he asked Norwood.

"Oh no, I will not," the doctor said.

"Well who will be overseeing James' care, then?" my husband asked.

"I don't know."

"What do you mean?"

"I don't know who will be on this weekend," the doctor replied.

"Don't you oversee this operation?" my husband asked.

"Yes, but scheduling is not up to me," the doctor said.

* * *

My son was ten days old when I gave him his first bath. I wiped the blood from his brow and arms. Gently I moved down his legs and maneuvered around where the blanket disguised his bleeding wound. He had become even larger since the morning. He looked like he was in so much pain.

"James, I am so sorry," I confessed. "I will miss your need of me and your deep soulful eyes and your voice, your cries and whatever your laugh would have sounded like. James, I will miss the slow Mommy and Baby dances we will never have. But James you will always have me. I will only ever be a thought away."

Ever so gently I wiped his brow, discolored purple and blue. The washcloth came back red. I wiped around his head without moving him; I was so afraid I would do more harm than good. I wiped gently around his eyes. They were swollen, and I didn’t want to sting them with soap. A tear escaped from the corner of his eye and rolled down his oversized, discolored cheek.

"Oh, look!" I called the attention of his nurse. "He is crying."

"That is the fluid trying to get out wherever it can," the nurse said. She sounded so cold she made me cry.

I put my lips close to my sweet baby’s ears, "Mommy’s here, honey. Mommy knows. Mommy is so sorry. I am going to miss you, too." Then I sang to him, kissed him and cried. Three more tears flowed from his eyes. With extreme care, I wiped each one.

I scrubbed gently my baby’s swollen body, and between his toes and then I dried him with a soft receiving blanket. I kissed the bottom of his feet with delight and anxiety, fear and pride. This is MY son.

Click. Snap. Beep. Click.

The hospital brought me back to reality. Medications had to be administered; monitors had to be checked. Lines and tubes adjusted. The nurse seemed rough to me, callous too.

The health care workers have distanced themselves. They no longer see my son as a baby; he has become a case. Without asking, the nurse takes the dishpan away. I am silently pointed to a chair to sit in if I must stay.

I am no longer welcome. I sit clutching the small, nearly full bottle of baby bath. I stare at my son; it is so awful to see him this way. My heart aches, my breasts hurt.

I gave my son a bath. His first and last.

My husband appeared in the doorway with the cardiologist that did the initial prenatal diagnosis. It was time for a private consultation. The doctor led us to an office around the corner from the children's ICU.

"What happened?" my husband asked several times.

"You trusted us," the cardiologist finally said. "You trusted us."

* * *

James Matthew Mannix died on October 13, 2001; he was just 11 days old.

Next: Mary Ellen Mannix and her lawyer, Jim Beasley Jr., go to court seeking justice for her son, James.

This excerpt is from a forthcoming book, Split the Baby, by Mary Ellen Mannix. She can be reached at maryemannix@ymail.com