“Mr. and Mrs. Burke, I am so sorry. Your baby has hydrocephalus.” My heart sank. I knew it wasn’t good. Just a few years prior, I babysat a little boy who had hydrocephalus. He was a twin. While his brother toddled around appropriately, he couldn’t walk or talk. “Too much fluid in the brain,” the doctor continued. “We are not sure how bad it will be so we will have to watch you and the baby closely.” I was 30 weeks pregnant with our second child.
We drove in silence, hit by a heavy wave of grief. Katie, our first baby, was almost two. “Mommy, what’s wrong?” she rattled on. I could only answer quietly through my tears, “Mommy’s okay, Honey.” Once home, the heaviness began to sink in. This was not part of our plan. I had imagined two sisters frolicking about, through tall grass, chasing butterflies, on a warm sunny day. The tears flowed.
The next three weeks were filled with many doctor visits and ultrasounds. There was no encouraging news but no discouraging news either. I became more familiar with hydrocephalus and knew what to expect after our baby was born. A shunt would be placed in the brain and a tube traveling from the shunt would be threaded under the skin and into the abdominal cavity. This would alleviate any more buildup of fluid and hopefully, our baby would develop normally. There were still no guarantees and we did not know how severely our baby’s brain was affected.
I arrived at my 33 week doctor visit as I usually had, and signed in at the front desk. While I waited, many women came and went. I mindlessly read magazine after magazine. My head began to throb as the wait continued past 45 minutes and then an hour. Finally, as my patience dwindled, I approached the front desk and questioned why my wait was so long. “You were not checked in, I’m sorry,” the woman said.
A nurse quickly arrived and escorted me to a room. My head throbbed as my blood pressure was taken. “Just lay on your left side and the doctor will be right in,” she told me.
I always liked seeing this doctor. He was kind and always happy to answer my questions about babies and hydrocephalus and babies with hydrocephalus, and any other hydrocephalus questions I had, which were many… and frequent. He took my blood pressure over small conversation. “How have you been doing, Lorraine?”
“Pretty good,” I answered, automatically.
“Your blood pressure is a little high. Stay on your left side for a few minutes and I will come back and take it again.”
“I waited so long in the waiting room and I have a headache,” I reasoned.
A few minutes passed. “Your blood pressure is 190/160. Is your husband here?”
“No, he’s at home with the baby,” I replied.
“Can he come here? I would like to send you to the hospital.”
“No, I have the car with the car seat.”
The doctor helped me up and guided me into his office. As I sat in the chair, I noticed his look of concern. “Would you like to call your husband, or should I?”
I felt the anxiety in my body begin to climb. My legs shook and my respirations increased. “You can call him,” I answered, my mouth too dry to speak.
“Hello, Mr. Burke… ”
I tuned out as I sipped small amounts of orange juice from a cup the nurse handed to me.
“Yes, I’ll tell her. Okay. Goodbye.”
Worried that an ambulance ride would cause seizures, the doctor said, “My secretary will drive you to the hospital. Your husband will meet you there.”
I was quickly admitted to the Obstetrics Unit upon arrival to the hospital. “Bed rest and left side,” the nurse quipped. “Doctor’s orders.”
My blood pressure remained high as medication slid through my veins. By the third day, there was no improvement. My face swelled with excess fluid. I missed Katie and I missed home.
“Hi, Honey!” Kevin said cheerfully, as he entered my room unexpectedly, carrying a beautiful bouquet of mixed flowers.
What a welcome sight he was, I thought. As we hugged, the telephone rang. “Hello?”
“Hi, Lorraine. Guess who’s having a baby today?” It was my doctor. He explained that my kidneys were beginning to show signs of failure and the only way to reverse the process was to deliver the baby immediately. He ended the conversation, “I’ll see you in the OR in 20 minutes.”
I had just eaten lunch, and my stomach churned loudly. My legs began to shake as the nurse entered the room. “Please, no,” I pleaded, “I just ate, I can’t have surgery.” Filled with fear, I made my way to the bathroom. “I can’t, Kevin. I can’t do this,” I cried.
My body shook.
“Here, take this,” the nurse said. “It’s medication that will settle your stomach and help prevent vomiting.”
I swallowed the medicine and continued to plead. “Please, Kevin, tell them I can’t have surgery. I just ate. I’ll never see you again. I know I am going to die,” trembling as I spoke.
Whisked through the cold halls and into the elevator, I continued my plea. “Goodbye Kevin, I love you.” He couldn’t hide his worry as the doors closed.
How could I die now, I thought. I’m only 21. Fear had taken over.
Tears continued to flow as I was placed on the operating room gurney. My doctor arrived and explained that he was going to do his best and I would wake shortly with a new baby. His sense of calm calmed me as I fell asleep counting to myself, “10, 9, 8, 7…”
I made it through the surgery and so did our baby girl. Because of the hydrocephalus, she was placed in the NICU before I could see her. (It would be four long days until we met.) Seven weeks premature, our little girl, MaryEllen, was perfectly fine except for mild hydrocephalus. Miraculously, her APGAR scores were 8 and 9, very good signs for a baby born this early.
I continued to have very high blood pressure so I remained on bed rest and was placed on seizure precautions. “Dimmed lights and limited visitors, Lorraine,” the nurse said as she conveyed the doctor’s orders. “You scared them!”
As the days passed, I began to slowly recover while MaryEllen declined. Her head circumference increased at an alarming rate. It was evident that she needed surgery. Her brain was filling with cerebrospinal fluid and it was pushing brain tissue against her tiny skull.
“Nice to meet you, Mrs. Burke,” he said. We met in the darkness of my cold hospital room. It was the pediatric neurosurgeon. The room, still dim because of my preeclampsia diagnosis, made it difficult to focus on the man who would save my baby’s life. The television glowed behind him. He spoke in short, monotone sentences. How could I trust this man? I thought. He was emotionless as he spoke.
He handed the consent papers to me. Risks include Infection, Bleeding, or Death.
“I have to sign this?” I questioned, in shock.
“She has to have the surgery, Mrs. Burke,” he answered, “She will die without it.”
Visions of an evil scientist in his laboratory flashed through my mind as I scribbled my signature and gave the papers back to the doctor. The dark room coupled with the doctor’s monotonous voice made it feel like I was signing my baby up for a nightmare.
This was too much for me. The nurses told me over and over that I had to try not to get upset, it could bring on seizures. How was I supposed to remain calm while surrounded by the unknown? My body was fighting so hard to get well and at the same time; I felt the need to protect my baby, my lamb.
MaryEllen came through the surgery feisty and fierce. Her little head, shrunken by the fluid drainage, showed every crevice of her skull. At four and a half pounds, she was ready for the world! She didn’t require any medical interventions and was released from the hospital six days after the dreaded surgery. She was coming home before Christmas!
Our sweet angel Christmas present would be home one month before her due date.
Little did we know, this wouldn’t be the only time MaryEllen would be coming home from the hospital in time for Christmas.
This post originally appeared on The Heartful Mom
Lori Burke is a married mother of four children. Two of her children were born with an extremely rare genetic condition, Warburg Micro Syndrome. They are the oldest known children in the world. Lori is a stay at home mom and a part time nurse. She shares her family’s rare disease journey at The Heartful Mom. Find her on Facebook and Twitter.
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