• Karen Santorum •
But we have this treasure in earthen vessels, to show that the transcendent power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies. For while we live we are always being given up to death for Jesus’ sake, so that the life of Jesus may be manifested in our mortal flesh.
—2 CORINTHIANS 4:7–11
I watched the wipers move back and forth on the windshield. One, two. One, two. One, two. The rhythm of the slippery, squeaky sound transfixed and distracted me. The slick roads shined with silver moonlight. I shifted in my seat, stretching my arms that gripped the wheel. My body was stiff from too many nights in hospital chairs. Bella had been there for thirty-five days now. I took a sip of coffee as I wondered if the results from Bella’s tests had returned. Rick would have called me if they had been bad. Or would he have waited until I got there to spare me the panic while driving? I glanced at my phone on my lap. That phone never left my side. I lived in the paradoxical fear of not hearing it ring but being afraid to pick it up because of what I might hear on the other end.
I didn’t ever want to go back to all the nights when Bella was failing and on death’s doorstep. The memories were too painful, so I stuffed them away, banishing them to a far corner of my mind, wanting desperately to forget. But as I drove on that road, I went back to that dark valley, to the emergency room, when stress and pain consumed me.
It was on an evening in November; I was in the kitchen, making dinner. As I chopped carrots, I recalled Bella’s six-month checkup with her geneticist. He was pleasantly surprised by Bella’s growth and good health. As he had said after her birth, she was writing her own book. With every filled page, there was one more reason to hope. She wasn’t going to be a textbook statistic or a case number. She’d survived autumn with only one hospitalization of a few days and recovered well. With her compromised immune system, I knew how blessed we were that that was the only incident.
Our family had finally gotten into a rhythm, a new way of living with our little Bella. The kids were doing well in school. We had found ways to juggle their after-school activities with the extra driving and the need for someone always to be home with Bella. We had prioritized simple living and looked for quality, not quantity, in our activities.
I’d even started thinking about what to cook for Thanksgiving dinner with my family. Elizabeth would do the stuffing. Sarah and the boys would help with the potatoes and vegetables. I would make the pies, and Rick would make the turkey. Some of my happiest memories with my family are of Thanksgiving morning. Now we had added a new little member to our group, one who gave us a particularly powerful reason to be thankful this year.
Bella would cheer us on from her high chair, her eyes alert and taking in all the action. Beaming, she’d kick her short, dangling legs back and forth. As always, she’d probably want to play with her plush baby doll, Gracie. Gracie wore a multicolored, patchwork dress and, like Bella, she always had a smile on her face. We’d recently discovered that Bella had a sense of humor, because whenever we laughed, Bella would join in. She was a lovable and easy audience for all the kids’ bad jokes and seemed to make everything even funnier with her joyful baby squeals. If Bella was laughing, everyone couldn’t help but join in.
Rick broke in on my thoughts. From upstairs, he called for me, panicked. “Karen, come quickly! Something’s wrong with Bella!” I ran to our bedroom to find Rick holding Bella in the rocking chair, saying, “Something’s wrong with Bella. I don’t know what to do! Karen, I don’t know what to do!”
My heart sank as I looked at Bella. She was quickly spiraling downward. Lethargic. Blue lips. I listened to her heart and lungs and immediately put her on oxygen, trying to keep her oxygen saturation levels (sats) up. What had started as a simple cold just days before had moved into her lungs. Her heart-shaped face was pale, her body frail and exhausted. Her violent coughs shook her small body as she worked to clear her lungs. Within seconds, before I could start a nebulizer or chest PT, Bella went into cardiac arrest.
With monitor alarm blaring and kids screaming, “What’s wrong?” I grabbed the Ambu bag, blasted the oxygen, and performed CPR. Everyone cried and screamed, trying to help me do what only I could do. Focused completely on my failing little girl, through tears I repeated, “Bella, don’t go. Bella, don’t go.” She couldn’t leave. Not in my arms. Not in front of her siblings. Not forever.
I told Elizabeth to call 911. She fumbled as she grabbed the phone and dialed. My senses were in shock. I was watching my baby die, right in front of me. I was doing everything I could, but I had no idea if it would be enough to save her. As I performed CPR, I heard Elizabeth place the call and the kids crying, asking what was happening. To this day, Elizabeth doesn’t remember how she quelled her sobs long enough for the 911 operator to understand what she was saying. After she provided our address, she pleaded, “She’s dying. Hurry! She’s dying.”
We all felt so helpless, so hopelessly and painfully inadequate. To this day, I wish I had sent my children out of the room. I wish I had protected their tender hearts. I wish they had never seen me sobbing as I was resuscitating my baby, their sister. Nothing can prepare you for such a heartbreaking and chaotic moment. I finally had the sense to ask Rick to usher the children out of the room; unfortunately, it was too late. The image of their sister walking the veil between heaven and earth is forever seared in their minds.
It felt like an eternity, but Bella responded within a few minutes. Her pink cheeks returned, heart rate normal and sats back to the high nineties. I embraced her, weeping and rocking back and forth as I sat on the bed. The paramedics arrived and took her from my shaking hands. Clad in dark uniforms and sturdy boots, their huge frames hovered over my tiny baby, making her seem even smaller than she was. They attached several cords to her body, moving swiftly and surely. The paramedic checking her vitals had coarse, large hands, but he moved with the precision and gentleness of a surgeon. I watched, fixated, still in shock. Elizabeth handed me a bag full of things for Rick, Bella, and me.
As they put Bella on the gurney, Rick and I hugged all our children, told them we loved them, and assured them that Bella would be all right. My friend Susie was on her way with a few of her children who were my kids’ best friends. Bridget had just arrived. Elizabeth had called both of them. When they heard her voice, they needed no explanation. They simply said, “We’re coming.” Rick and I left, knowing our kids at home were in good hands.
In the back of the ambulance, I stroked Bella’s curls and clung to my seat with my other hand. Her eyes were closed, the pediatric oxygen mask covering most of her pale face. They had attached sensors to her body and inserted an IV into her arm. Was this real? Just days ago she was smiling and healthy. I put my finger under her hand. But she didn’t grab it. Her fingers were limp and unresponsive. I wanted to cry out, to beg her to hold it, to not let go. I needed a lifeline to throw out to her, even if it was just my hand, because I felt she was drifting away.
Listening to the sirens wail, my mind began racing with the possible outcomes. They were taking her to our local hospital, in spite of my requests to take her to a hospital that offered specialized pediatric care. Legally, they had to take her to the closest one. Looking out the back window, I saw Rick following in the car behind. The EMTs radioed the hospital to prepare the doctors. “Six-month-old infant with Trisomy 18. Went into cardiac arrest. Mother resuscitated her before our arrival. Pulmonary congestion and difficulty breathing.” As they continued by reading her vitals, I felt as if I were in a nightmare. My six-month-old had just had a heart attack and could have one again if we didn’t get there soon. In my head, I repeated, Be with her. Be with her, Lord. Please. I didn’t know how else to pray in those moments.
The hospital doors burst open. A team of several doctors and
nurses waited for us. Wheeling her into a room, they rushed around her, examining her and setting up the monitors. The anesthesiologist informed me that they did not have a pediatric-sized intubation tube, which was exactly my fear with going to this hospital; but he had another idea. He was able to ventilate Bella by inserting a laryngeal mask airway (LMA) instead. It was a temporary solution, and it worked. They asked me questions. Then they repeated them. Was I unclear? I didn’t know. What I did know was that I had to focus. She had to get to the Children’s Hospital in Philadelphia. I had to fight for my little girl. The claws came out, as did my tenacity.
Several minutes later, Rick came into the room as I was asking the doctor for a transport to CHOP, the children’s hospital that we knew, loved, and trusted. I had called them directly, and they had a helicopter standing by to life flight her as soon as we gave the go-ahead. Then Rick interrupted. “I don’t want to wait for a helicopter from Philadelphia to get here. It’s going to take too long and it costs a lot of money.”
The doctor responded, “We could transfer her to a closer hospital that can have a helicopter out here in a fraction of the time.”
I didn’t want to take her there. Bella’s doctors, the ones she needed right then, were in Philadelphia, and CHOP offered the best medical care we could give her. We went back and forth, but Rick was resolved and told the attending physician to organize a transport to the area hospital. I didn’t agree.
When Rick was a United States senator, I trusted him with the work he did; how he navigated his way through Congress and the labyrinth of the government was his area of expertise, not mine. Now it was time for him to trust me. I was raised in a medical family. My father was a physician, and seven of my siblings are physicians, nurses, and dentists. I was practically raised in a hospital, and I am a nurse who understands medicine, how to navigate through a hospital, and more specifically, the needs of critically ill infants. This was my area of expertise, and I needed my husband to trust me.
I insisted that not all hospitals are alike and there are huge differences in the quality of the education and knowledge levels of the doctors and nurses. Their skills vary widely, as well as the available medical equipment, supplies, and procedures; unfortunately, by not going to CHOP, we were taking our chances. This was not a risk I was willing to take. Not with my Bella, not with any of my children.
Two hours later, the helicopter had not arrived. We were told they should have taken about thirty minutes but were inexplicably delayed. As I paced by the window, I thought about how we could have been on our way to CHOP by now. I looked at Rick. He was on his phone. I stopped. I think he could sense my eyes boring a hole into his head, because he looked up. “This is insane.” He nodded, calmly. How could he be calm at a time like this?
Just as I was about to burst with frustration, the door opened. The chopper had arrived. Their team came into the room with the attending physician. After examining her, the EMT turned to us. “We weren’t aware that she had an LMA. We can’t transport her with this.”
My blood was boiling. I couldn’t believe it. “I don’t understand. You were apprised of her situation. You knew that she had this airway!”
He shuffled awkwardly, stammering to reply as he flipped through papers on his clipboard. “There was a miscommunication.”
My gaze turned stony and my jaw set. Barely able to speak, I said, “Your miscommunication may cost my little girl her life!” Filled with regret and frustration, I focused on transporting Bella to a hospital that could give her proper care. Rick and I once again found ourselves in a heated discussion about where to go, and the tension overwhelmed me. I wanted to rush to CHOP, but we were promised by a hospital I no longer trusted that they would have an ambulance there right away. Rick insisted on the ambulance.
We waited for almost three more hours for the ambulance. Like a caged animal, I circled the room again and again praying for my Bella, unable to focus on anything. They arrived with no explanation as to why it took so long, and as they loaded her into the back of the ambulance, I moved to climb in with her. An EMT stopped me, “I’m sorry, but you’re not allowed to ride in the ambulance with her. It’s hospital policy.”
I wasn’t about to leave my little girl alone in an ambulance! But the EMT wouldn’t budge. I had no other choice but to ride up front with the driver, away from my Bella. Rick pulled the car around and watched the ambulance drive away, and he followed. I was suffocating in a nightmare and could not break out of it.
After Bella was admitted to the pediatric intensive care unit, she was placed in a shared room. A man in uniform stood at the foot of the other bed. He stood with arms folded, feet spread wide, and stared intently at the bed in front of him. What was an armed guard doing in here? I asked the nurse, and she told me it was to keep the other patients safe. I asked her why my baby was in this room. Then, from that bed, hidden only by a flimsy curtain partition, I heard the sounds of violent vomiting.
I gasped and looked at Rick. Before either of us could say anything, alarms went off and two nurses ran into the room. They pushed back the curtain just enough for us to see that the bed was occupied by a teenage boy who was throwing up all over his bed. I wanted to wheel Bella out of the room at that very minute. I rounded Bella’s bed to talk to Rick and spied a pile of soiled linens at the foot of Bella’s bed. Shocked, I realized they were undoubtedly from the neighboring bed. A deathly ill baby with a seriously compromised immune system could not room with a violently ill teenager who could expose her to who knows what!
I pulled Rick out of the room. “I’m going to the head nurse to get Bella transferred to a different room.”
He put his hands on my arms and said, “Calm down, Karen!”
Bad move. I shook his hands off and backed away, shaking my head in disbelief. Hurt. Angry. No, I wouldn’t “calm down.” My husband was always a feisty, strong, and passionate defender when the occasion arose. Who was this mellow guy? I needed the fighter, to fight with me and for our child. My body went numb. The isolation I felt sent chills through me as I turned abruptly and headed toward the nurses’ station.
“We don’t have any other rooms available.” The nurse turned her attention back to filling out paperwork.
No rooms, huh? I walked down the hallway and rounded the PICU. Several empty rooms. Back at the nurses’ station, I calmly said, “I think there must be a miscommunication, because there are several empty rooms here. My child has a seriously compromised immune system, is critically ill, and is currently in the same room with a vomiting juvenile. If you don’t transfer her to a proper room, I will immediately call Children’s Hospital in Philadelphia and arrange to transport her there.”
The nurse stammered out an apology, remarking that they were very busy. She would see what they could do.
Thirty minutes later we were transferred to a room in another area of the PICU. This room was also shared, but at least there were no signs of vomit. The doctors came in and told us the results of the first round of bloodwork. Bella’s carbon dioxide levels were through the roof, which was caused by her ineffective breathing, specifically, the fact that she wasn’t exhaling fully. This buildup of carbon dioxide changed the pH in her blood, giving her metabolic acidosis, which changed the rhythm of her heart, causing a heart attack. Currently, she was on a ventilator and had what they suspected was viral and bacterial pneumonia in both lungs. They put together a hefty cocktail of various drugs and scheduled more tests with the hope of getting more answers.
Now into the wee hours of the morning, Rick and I were exhausted. Sitting in a chair, Rick fell asleep on the other side of Bella’s bed, phone in hand. His head bobbed up and down as he dozed. Occasionally, he awakened with a jerk, looked around, and then closed his eyes again. In a chair on the other side, I felt there was much more than a twin-sized hospital bed between us. I felt very alone, as if I were the only one who was in the ring for Bella. And worse, I’d been gut punched and I was down for the count. One. Two. Three. I needed
Rick to lift me up, to help me protect her.
I crossed my arms on her bed and leaned my head on them. She was asleep now. They’d given her something to help with the pain and so she could rest. Her little hands were balled into fists, pointer finger and pinkie touching. I loved those tiny hands. She looked lost in the yellow hospital gown they had put on her. Even though we had surrounded her with the proper pillows to support her, she barely took up any space on her hospital bed. Her eyelashes fluttered and she shifted her head. I wondered what she was dreaming about.
I jolted awake to the sound of bloodcurdling screams. Rick had jumped up, tense and bewildered. The child in the bed next to us was writhing in pain and screaming like I had never heard anyone scream before. Bella started wailing and coughing. Monitor alarms screeched as the other child’s parents talked loudly in a language I didn’t recognize. I stood up and started stroking Bella’s head, holding her hand and talking to her. She continued to cry, but the coughing subsided. Doctors and nurses came and tended to the other child as the screaming continued. After hours of nearly constant screaming, I asked the nurse once again if we could be placed somewhere else. We were striking out again and again.
In the days that followed, Rick and I took turns keeping vigil at Bella’s bedside. We became like two shadows, passing each other in fluorescent-lit halls. Thanksgiving came and went. The dream of preparing the great meal with my family: gone. Not being together as a family on Thanksgiving was sad and unnatural. I was home with the children for breakfast, and Rick for dinner. Bridget spent Thanksgiving away from her family to be with us. I don’t know what I would have done without her. She managed the house, took care of the kids, and became a source of strength and support for them. She and Elizabeth did all the cooking that Thanksgiving. We all did our best, prayed together, and counted our blessings.
After six months, Rick was still stoic. He kept it together and was “at peace.” As much as it pained me, I learned what that meant to him. He was at peace if Bella lived or died. And that broke my heart. We both abandoned ourselves to Divine Providence, but I believe we understood that term very differently. I came to accept Bella’s diagnosis while simultaneously deepening my trust in the Lord, but that didn’t mean I wasn’t going to fight for her. Trust did not mean abandoning her. Rick accepted who Bella was from the very beginning. I loved his acceptance of Bella and I drew strength from it. But as the first six months of Bella’s life passed, I think Rick resigned himself too wholly to the fate many doctors and statistics had predicted for her. He thought I was fighting a fight we couldn’t win.
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