Bella's Gift

by Rick Santorum

  We finally moved to Northern Virginia after a year in the Senate, trying to go back and forth to our home in Pittsburgh and living in an apartment in Arlington. It seemed as if we were on the road between Pittsburgh and DC half of our life; and first with two, then with three children under age four, it was too much. We had to decide where to plant the family for my time in the Senate.

  It was not an easy decision. While my family had all moved away from Western Pennsylvania, Karen still had living there her parents, nine of ten siblings, and some thirty nieces and nephews. They are a tight-knit family who get together all the time and are very supportive of each other. Again Karen put our marriage and family first in 1995, and we moved into a home in Herndon, Virginia, about twenty miles outside of DC.

  The 2012 presidential race was a difficult and stressful journey, but for sheer effort and time away from family, the 1994 Senate race was the worst. I’ll never forget an incident that was a wake-up call during that year of transition in my life, 1995. Karen and I were changing out clothes for the kids, and Karen pulled out a pair of boy’s pajamas and said, “Aah . . . Johnny loved these pajamas; he wore them to bed almost every night.”

  I looked at the pajamas and said, “I don’t recall ever seeing those!” I vowed then never to let anything consume me as that race had done. That moment helped send me on a different path to be a better husband, father, and follower of Jesus Christ.

  In Virginia, our lives slowed down some, but the days were still long, and there was the constant travel to Pennsylvania. I pledged to visit every county every year, and I did so for my twelve years in office. Karen was always there, supporting this time-consuming job.

  Our children were now getting to be of school age, and we had to make a decision on schools. We were still traveling back and forth to Pittsburgh on a regular basis on weekends, and during the weeks the Senate was not in session. If we put Elizabeth in school, that travel would be dramatically curtailed. In addition, when I was in DC, I was routinely gone from the house at 5:30 a.m. and didn’t get home until 8:00 p.m. Karen began looking into the possibility of teaching the kids at home. After much prayer and research, we decided to give it a shot for just one year.

  It worked out beautifully for everyone that year, so we decided to try one more year, adding John to the mix. We ended up making eighteen one-year commitments to school at home, and it has made all the difference for our family. We have an incredible bond with our children that I would have never had given my schedule. Teaching the children at home allowed our family life to be in rhythm with my Senate schedule. With the exception of one year when I solo taught Daniel in first grade, Karen carried the vast majority of the responsibility for educating our children.

  After Gabriel’s death in 1996, we had three more children. In spite of the craziness that comes with caring for a hockey team–sized clan, Karen and I were hoping for even more. We realized that as much as you love the first child, and you don’t think you could possibly love another child as much, you do. Each child, I think, increases your capacity to love, so we hoped for God to continue to bless us with more children. Eventually, with time the window of opportunity for another baby closed, and we accepted the fact that God had no more children for us. That’s when God surprised us with a very special gift.

  When Bella arrived and we learned the news of her condition, Karen went into a gear I had only glimpsed over the years. “Momma Bear” doesn’t begin to describe how she cared for her miracle baby. She was determined to give Bella the perfect environment in which to thrive, starting with a germ-free home. I wish I had been wise enough in May 2008 to buy stock in Johnson & Johnson, the makers of Purell hand sanitizer, because we bought it by the case! Karen made sure we all washed our hands before holding Bella, and if there was no water around, we used hand sanitizer.

  Karen and I both spent hours on the Internet trying to gather information, but we found the best source was talking with other T18 families. Bob and Heather Mylod were particularly helpful. I saw Bob’s father at a small meeting of Catholics in Baltimore when Bella was just a few weeks old, and I shared the news with him. He told me about the blessing of his two-and-a-half-year-old granddaughter, Vivi, and how she was so full of life. After reading all the tragic stories on T18 websites, we needed some hope!

  And hope is what they delivered. Their first advice was to not read anything about T18 online! Second, they said we should find a team of doctors who would fight for Bella as they would for any other child. While it is true that many T18 children do not survive long, their deaths are, in many cases, a self-fulfilling prophecy. We discovered the medical community often writes off these children. Parents are advised to do nothing or to simply provide comfort care, which ultimately denies these children lifesaving treatments.

  Heather and Bob gave us hope that maybe, just maybe, if we provided Bella with the best possible care and surrounded her with constant love and prayed for a miracle, she, too, could live to the age of two and a half or older. They also provided insights on every aspect of their care for Vivi, but the most important thing that struck me as I listened to them was that they were completely devoted to their daughter. You could just feel the love coming through the phone.

  Vivi was another precious member of their family who, like every child, brings joy and hardship. I must admit I didn’t see that right away. I was still too focused on managing the rest of my family’s anxiety.

  Another angel who blessed our family was the mother of Peter Kellett. Her name is Mary, and Karen heard about her organization, Prenatal Partners for Life, from a mutual friend. Like the Mylods, Mary and her family are strong believers whose faith was challenged but ultimately enriched by carrying the cross of a T18 child. Peter was almost two, but Mary was full of what seemed like a lifetime of information to help us gain confidence in caring for Bella.

  When Bella was four years old, I was the featured speaker at a fund-raising event for Prenatal Partners for Life and had the chance to meet Bella’s T18 friend Peter and many of Mary’s other children. I sat with Peter on my lap, just as I hold my Bella, and so many of his mannerisms caught me by surprise. I had thought they were unique to Bella, but Peter moved and sounded just like her. He was so cute.

  I met many more moms and a few dads at the banquet afterward and heard story after story of their heroic efforts to care for these fragile children. Almost all the stories involved battles with doctors and hospitals to get more than the merely palliative care called for in the medical literature. But of all the stories, one sticks with me to this day.

  This was a woman—let’s call her Rene—from Canada, who told of her experience with her daughter, Annie, with T18. The beginning sounded just like Bella—in the NICU, doing well. As with Bella, the doctors told the family there were no life-threatening issues. Annie’s tests were normal, and they sent her home because there was nothing more they could do for her at the hospital.

  For the first few weeks, everything seemed normal, but Rene began noticing a gradual decline in Annie’s health because of respiratory difficulty. She went to the doctor, but the doctor urged her to take a conservative approach to see if Annie would improve without treatment. After about three months, Annie’s condition declined rapidly. I saw a picture of Annie taken a week before she died. Her face was red and puffy as if she had been holding her breath for two minutes. When Rene went back to the doctor, he said it was probably just a reaction to medication.

  As I was listening to this story, all I kept thinking was that this was what we might have to deal with someday. Rene was describing what the doctors said would likely kill Bella, some sort of respiratory failure or disease. My heart was breaking for her, but Rene was also cranking up my anxiety for our little Bella.

  As Annie’s condition worsened, Rene brought her to the hospital. There she was diagnosed with severe hypercapnia, a buildup of carbon dioxide in her blood. Hypercapnia can be treated, but her levels were so severe that she died within hours.

&n
bsp; Rene, as you could imagine, had struggled with losing Annie. Annie had seemed to be doing so well, other than the lung issues. Rene had to get some answers beyond the typical “T18 children just don’t live long.” That she knew. What Rene had to find out was why Annie died.

  The first clue to this tale came from the coroner’s report. It stated that Annie had a “do not resuscitate order” when she was admitted to the hospital, even though no one in the family had consented to such an order.

  Remember, Rene lives in Canada, which has a single-payer, government-run health system—think the Department of Motor Vehicles, only this time it’s lifesaving treatment, not your license you are waiting for. After a protracted dispute in which the hospital refused to release Annie’s records to her parents, Annie’s records were released. The records revealed a tragic story of deliberate neglect by a team of medical professionals who were charged with her care. The first set of tests on her before she was released from the hospital after her birth showed that she was retaining CO2!

  It turned out that the only people who didn’t know Annie was dying of CO2 poisoning were her family. It seems the medical team had determined her life was not worth the expenditure of scarce government resources. And since T18 children don’t generally live long, they felt that letting her slowly suffocate while her parents were kept in the dark about her condition was a humane way to euthanize her.

  Annie’s story could never happen in America, you say. We are on our way to such a state, however, with a lethal combination of increased government control and a progressively utilitarian view of life. As America transitions from a private health care system to one of government command and control under the Affordable Care Act, we need to keep in mind that in a private system the patient is a profit center; in a government-run system the patient is a cost center. In which system would you want to be a patient—one that is incentivized to provide care or one that is predisposed to delay and deny medical care?

  This story was actually one of the reasons Karen and I decided to throw my hat in the ring for president in 2012. As the father of a child with both mental and physical impairments, I knew Bella and her peers would be the first to have their care ratcheted back. I felt that winning the White House and stopping the implementation of the Affordable Care Act was the best way to save Bella and so many other children like her from this horrible fate.

  Believe it or not, these anecdotes from parents of T18 children were the best aid in coping with all that comes with T18. But as much as you can prepare, there is nothing like experience as a teacher.

  From May to September of the first year of her life, Bella was cruising, but a simple sniffle turned our lives upside down. Parents and doctors told us repeatedly that a cold would be a life-threatening event for Bella. As much as I thought I understood their worries, we were totally unprepared when it happened.

  When autumn came, Karen battened down the hatches to keep Bella away from any germs. Even though she had had a great summer and had gained a good amount of weight for a baby with her condition, she was still barely on the growth charts. In spite of the precautions, she woke up one morning with a runny nose. That night was a tough night, as the cold started to go to her chest. While we were incredibly worried, she seemed to be handling it like our other babies.

  When we awoke the next morning, she had stopped crying and whining, but her breathing became labored. Karen quickly called her sister Kathy, who is a pediatrician, to seek counsel. Karen checked Bella’s heart rate, and it was down to sixty, which for a little baby is low, but for a sick baby is very low. I was sitting next to Karen as she held Bella and talked with her sister, and it was clear our baby girl was struggling to breathe.

  Karen gave Bella oxygen with a face mask. Then I remember Karen saying that Bella was getting dusky even though she had increased the oxygen. I noticed she was working hard to breathe but was not sure she was actually getting any air in her lungs. At this early point in Bella’s life, she did not yet have a heart rate and pulse oximetry monitor. Karen listened with her stethoscope again, and this time Bella’s heart rate was thirty. She had stopped breathing. Karen immediately started CPR to revive Bella, and I grabbed the phone and called 911.

  Karen is an awesome nurse. She had worked in one of the busiest neonatal intensive care units in the country for nine years and never lost a patient on her shift. She not only has great skills, but she also has such a loving heart of compassion for children. I know every one of those children she cared for felt her love. It’s one thing to put your skills to work on the job; it is another to gather your wits and be able to administer CPR properly to a tiny baby who is your own daughter. As I was on the phone, talking to the dispatcher, giving him all the information I could, I was marveling at how Karen, panicstricken and a ball of nerves, was holding it together to help Bella breathe until the EMTs arrived.

  Thankfully, we were fewer than five minutes from the local ambulance station, and they arrived in minutes. They hooked Bella up to a monitor. Her pulse had returned to normal, but she had less-than-optimal oxygen levels. Praise God, she was still with us. By the time Karen and the team hopped in the ambulance to take her to the hospital, she had stabilized.

  When it comes to Bella, Karen and I are in sync—hospitals may give great care, but we only go there as an absolutely last resort. Nothing against hospitals, but there are just too many sick people around with all sorts of bugs worse than what you came in with. So, four days later Bella came home from the hospital, and while she was not back to good as new, she was home. She was still on oxygen to help her breathe because her lungs were not fully recovered, but she was our smiling, happy girl again. We felt as if we had dodged a bullet. So many of the children we had heard about from our friends had horror stories of long stays, ventilators, and even surgeries.

  We brought a few new medical devices from the hospital to help us take care of Bella at home. Since she was still on oxygen, we needed a pulse oximeter to monitor her heart rate and the oxygen levels in her blood. At first I hated that machine; I was so worried about Bella that I just couldn’t take my eyes off it. When it alarmed—day or night, awake or asleep—we would make a beeline to check that she was okay. Ninety-nine percent of the time she would be fine, but with Bella we knew that it only takes once. Later we realized what a godsend that machine was.

  She was fine for a few weeks, but it was taking a long time to wean her off the oxygen, particularly at night. Then one afternoon in early November, the sniffles started and by nightfall she was having trouble breathing through her nose, though her chest was clear. We started her on medication and prayed it would take hold before she got too sick.

  We prayed that the cold would not go into her chest, but by morning the coughing and wheezing had started. We knew what that meant. We had to watch her blood oxygen levels, and if she couldn’t keep them above ninety-four on the pulse oximeter, we would have to take her in. I can’t stress enough how much we wanted to avoid going to the hospital. It wasn’t just the infections; it was also a concern about the care she would receive. We had heard so many horror stories from other parents of children with disabilities, and we feared that the doctors or nurses would treat her differently than we desired.

  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.”

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  LOVE IMPLIES SACRIFICE