We felt comfortable with the Children’s Hospital of Philadelphia (CHOP). They had taken care of a few of our other children through the years. We knew them and they knew us. They had treated Bella a few weeks before, and they were terrific. I sat there rocking Bella as all these thoughts went through my mind. Back and forth, back and forth, the movement soothed Bella. Karen had just given her a nebulizer treatment and chest physical therapy. Bella responded well, so Karen went down to the kitchen to make dinner. I was singing Bella lullabies, and her color was good and she was breathing easy. Eventually, the congestion returned; one moment she seemed to be fine, but in an instant it all changed and Bella’s breathing became labored.
The monitor alarm blared, and I saw the monitor fall from ninety-four to eighty before I called out to Karen. She and the kids rushed in to see Bella trying to breathe, but no air was getting into her lungs. For a few seconds I tried to massage her chest and pleaded with her to keep trying to breathe, but her heart rate and oxygen levels continued to drop.
At that moment, Karen placed Bella on the changing table, assessed her, and grabbed the Ambu bag (another item we had brought home after our last visit to the hospital). She attached the oxygen tubing and began cardiopulmonary resuscitation. Karen again amazingly stabilized Bella and kept her alive until the EMTs came to continue her care. Twice in one month, Karen had been there when Bella needed her, but Bella needed both of us during the next five weeks, in three different hospitals, as we fought for the best care for her.
Perhaps Sarah Maria summed up Karen’s role in taking care of Bella best. On the night Bella crashed the second time,
I had called home from the emergency room to keep the family apprised of Bella’s condition. When Sarah Maria got on the phone, our precious ten-year-old, full of enthusiasm, said to me, “Dad, Mom saved Bella’s life.”
As I was saying, “Yes, she did,” Sarah Maria continued, “and Dad, you didn’t do a thing!”
The last thing I thought I would be doing in the emergency room that night was getting in a good laugh, but I think the entire floor heard me. I finally responded, “Honey, when it comes to your mom, you’ll find that is the case more often than not.”
8
LOVE IMPLIES SACRIFICE
•
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.