Bella's Gift (6 page)

Statistics. I didn’t like them when I earned my MBA at Pitt. I’ve seen them twisted for political advantage and used to validate lies, but I hated this one the most. Of all Trisomy 18 children diagnosed in the womb, 90 percent don’t survive birth, and of the 10 percent that survive, 90 percent don’t live to see their first birthdays. This condition had a 1 percent
survival rate. I was never a dad who pushed his kids to be a 1 percenter—you know, the top 1 percent of income earners that the radical left likes to rail against—but I had always believed they were capable of reaching whatever goal they set their minds to. Now I looked at that 1 percent as the equivalent of climbing Mount Everest.

How would I handle telling Karen and the kids what I had discovered?
Should I even tell them? If I don’t, how should I prepare them
? How can anyone be prepared to hear that the child you think is perfect is going to die, and soon? Most T18 children die within the first few weeks after birth.

I could have been wrong, so I contacted the pediatrician and told him of my discovery. His response was the predictable: “Let’s wait until we get the test back. No use speculating when we will know for sure in a few days.” Of course, he was right, so I decided to take the same approach with Karen and the kids. No use jumping the gun, particularly when, in spite of all the evidence, Karen was holding firmly to the hope that Bella was going to be okay. But I also was determined to do my best to begin to lay the groundwork for what was likely to come.

Karen and I both were voraciously reading as much information as we could on T18 to find some light in the impending darkness. The more we read, the more hopeless it seemed. As I prayed about how to handle this, I just kept coming back to my experience with Gabriel—when I’d learn to trust in God and believe, as the great hymn says, it is well with my soul. In fact, I don’t recall ever being so alive in the Spirit as I was during those few days. I realized that was the only way I could hold my family and myself together as the waves were about to crash down.

When the day came to receive the test results, I was convinced Bella had T18. But that was only part of the story. I had learned that, as with almost every condition, there are degrees or ranges of severity. In the case of Trisomy 18, there was “full” and “partial.” Children with partial T18, while still severely challenged, have fewer physical and mental issues and thus have a much better chance of survival. We had spoken with the geneticist, and he was optimistic that if she did have T18, it would be the less serious, mosaic condition.

That was our prayer, and Karen’s heart was holding on to hope. Bella was sailing along, even though she weighed less than four pounds, was five weeks premature, and was unable to eat much by mouth. Even for a normal baby she was thriving, much less for a baby with a fatal condition. In Karen’s heart the indicators were a variation of the norm and nothing more; Bella was going to surprise everyone and either not have T18 or have mosaic T18.

In the days while waiting for the test results, we read all we could find about this condition. Karen’s father had been a brilliant medical geneticist, so this was very much in her wheelhouse. She knew the gravity of the diagnosis and was hoping and praying for a miracle.

“I am sorry, but Bella has full Trisomy 18.” The doctor’s words ripped like a bullet into our hearts.

“Are you sure it is full . . . full Trisomy 18?” I asked.

While the doctor provided what seemed to be a million caveats, the answer came back to me as yes. Our little Bella was going to die.

Even though I’d suspected the worst, I didn’t really have time to digest it all. Karen needed me. I had to comfort and
encourage, even when there didn’t seem to be any hope. The coming to terms with it came later, when I had to inform our family and friends that, in spite of their prayers, another child was going to be taken from us. We just didn’t know when or how. The calls were cathartic, even though I had to explain the details over and over again, but my sole focus was to love and serve my family. Someone had to rise above and hold us together.

What helped me the most during this time was my faith and the thought of my son Gabriel. I thought of the horror of losing him and yet the blessing he still is to our family and me, and the impact his life has had on others.

Of the 10 percent of T18 kids who survive birth, a very high percentage die in the first few weeks, and the doctors were sending Bella home on hospice care. We had to fight for appropriate life-sustaining care while accepting that she would not live long. I decided to deal with that reality by accepting and being at peace with God’s will for Bella.

I had some tough moments, but I was the rock for the family. Sometimes too much so. Karen would get upset that I wasn’t going through the pain and anxiety in the same way she was. I learned quickly that explaining how I was holding it together was not a good idea. My task was to affirm her way of dealing with the grief, while also loving her and helping her recover.

After ten days in the NICU, Bella was on her way home. It was a joyful and anxious day. It had been six years since we had a baby and we had thought we were out of the baby
business, so we had given away all our baby stuff. In spite of the diagnosis, we decided to proceed with setting up a cute nursery. We had a bassinet set up for her, but Karen insisted on buying a crib for the day when Bella outgrew the bassinet.

Ever the practical guy, I wasn’t always sensitive to the emotions in the house. Like the day Elizabeth and I were unpacking the crib. I told her to save the box that Bella’s crib mattress had come in. She looked at me, confused, and asked why.

“Well, we just don’t know how long Bella is going to be here.”

I wish I could take those words back, because I’ll never forget the way she looked at me, as though I had not only hurt her but condemned Bella myself. My feisty Lizzie grabbed the box and tore it up as she started to cry. “You have to believe in her!” she said. “You have to have faith! If you don’t, then who will?”

Looking at the pile of cardboard, I felt ashamed. I hugged her and we both cried. I knew she was right, but I just didn’t know how I was going to believe that Bella could survive when it seemed so impossible. Losing Gabriel taught me to trust God’s will, that all will be well in the end. Elizabeth reminded me that accepting God’s will didn’t mean abandoning hope.

3
LOVE THROUGH PAIN

•
Karen Santorum
•

It takes courage to love, but pain through love is the purifying fire which those who love generously know. We all know people who are so much afraid of pain that they shut themselves up like clams in a shell and, giving out nothing, receive nothing and therefore shrink until life is a mere living death.

—ELEANOR ROOSEVELT

W
e Love Bella’s Dad”

Written in silver glitter ink on a piece of pink poster board, the words waved back and forth in a sea of
enthusiastic supporters. My husband and I were walking down the rope line, shaking hands and being photographed. After being on a presidential campaign for several months, we’d seen our fair share of campaign literature, T-shirts, and even some eclectic, homemade signs during the many rallies we had held. But this was new. Cameras flashed, reporters hounded us with questions, and smiling faces encouraged us. Yet in that moment, everything slowed as I looked beyond the fray.

“We Love Bella’s Dad”

A plethora of pretty, red-crayoned hearts framed the words. I craned my neck to find its artist in the crowd. Then, as her dad lifted her above the crowd and onto his shoulders, I saw her: blonde pigtails tied up with ribbons, blue eyes, and a sincere smile. She had Down syndrome. Walking over to them, excitement evident on my face, I introduced myself and thanked them for coming. The little girl’s name was Julia. She was there with her parents and her big brother, Michael. Complimenting them on their artwork, I asked who made the sign.

Michael, who was no more than eight, replied quickly and enthusiastically, “Julia did the hearts, but I did the letters, because I’m her brother and I’m a big helper.” The little guy’s cheeks were red as he bashfully twirled the rope line after his proud declaration. Smiling, I told Michael that he must be a very good big brother. He beamed in response.

Julia waved the sign back and forth as her father lifted her from his shoulders and set her on the ground. Looking up at me, she bashfully tilted her head and smiled. I bent down. “Hello, Julia. I like your sign.”

Her smile turned into a grin as she looked at it herself and said, “It’s pink and so pretty!”

It was.

“I love it, Julia! Do you know pink is Bella’s favorite color too?”

Surprised and excited, Julia said, “Wow! Give her a kiss from me!”

I smiled and opened my arms as she came to give me a hug. In a sea of people, during long days of traveling and campaigning, this moment renewed my sense of purpose and determination.

Turning to their mother, I was moved by the reaction on her face. Smiles and tears simultaneously crossed her countenance. Reaching for my hand, she whispered, “Thank you for giving us hope.”

I squeezed her hand, smiling as a silent moment of understanding passed between us. I knew the fears, struggles, and joys of a mother with a special-needs child. I was one of them.

January 28, 2012. This date is seared in my memory as one of my most difficult days as a mother. On that day, the story of my youngest daughter’s disabilities came into the spotlight under complicated circumstances. Several days after the South Carolina Republican presidential primary, our sweet little Bella got very sick. We had taken our entire family down to South Carolina before the primary to campaign. During our trip, Bella had enjoyed many walks on the beach and the healing sea air. Then, the day before we left to go home, she began to get sick. What was initially a runny nose went into
her lungs. Pneumonia. She was lethargic and out of sorts. My first thought was to get her home, back to her comfort zone. I had been a neonatal intensive care nurse for years, a background that was invaluable in a moment like this.

Rick continued on to Florida to campaign for the next primary. As he hit the trail, voters clamored for all the candidates to release their tax returns. Unlike the other candidates, Rick did our taxes himself, your average-Joe Quicken user. So, he had to return home to compile them for release.

Back at home, we hoped Bella would mend quickly and not get worse. After trying every measure and treatment to help her turn the corner at home, I was at a loss to help my little girl. No color in her face. Breathing labored. As she let out a cry that turned into a cough, her heart rate soared even higher. It had been increasing since we’d returned home. Her lungs were filling. She had to get to the hospital. Providentially, Rick’s twelve hours at home to get our tax records came right in time for him to rush her to the hospital with me.

Admitted to the pediatric intensive care unit (PICU), Bella was stabilized by the medical staff. They attached tubes, probes, and wires. I watched, silently. I’ve done what those nurses were doing. I’ve put in more IVs than I can count and hooked up vital monitors, which means I know when they’re doing it right, and frankly, when they’re not. Those nurses did their jobs quickly and correctly.

Bella was in critical condition: pneumonia in both lungs. Rick and I were exhausted and worried sick. If she kept declining, we would have to put her on a ventilator, a dramatic step that we did not want to take.

Rick quickly decided he couldn’t leave with Bella in intensive care. We then faced a difficult choice: whether or not to release a statement about Bella’s hospitalization. We understood that if Rick left the campaign trail with no explanation, the news networks would speculate that he was a lazy campaigner, or worse, leaving the race. With the Florida primary just days away and three more primaries within the coming weeks, there was a lot at stake. All of this, however, was peripheral to our main focus: getting Bella through this crisis.