Bella's Gift (18 page)

Lynne Ganz is Bella’s occupational therapist, who also does cranial sacral therapy. When Bella is with her, she begins the session sitting at a small table with her braces on and her feet on the floor. Bella does fine motor activities with a lot of different toys. Lynne is very patient and encouraging. When Bella shows signs that she’s had enough, we lay her on a table
and Lynne does cranial sacral therapy, which always relaxes Bella. How I would love to have a few of those sessions myself!

When Bella was at the Children’s Hospital of Philadelphia, the therapists there worked with her and taught Rick and me how to do the varying therapies. There’s no doubt in my mind that part of the reason Bella has done so well is because of these therapies. From the time Bella was a baby in the NICU, she has loved having her tiny feet massaged. My dear sister Sue called me one day and recommended that we do foot massages. For nearly seven years, Bella has had her feet massaged with lavender oil while listening to the sounds of whales in the ocean!

When we bathe her, she also gets a full-body massage. I had always done infant massage with my babies, but I learned so much more at CHOP about techniques and the benefits of massage. There was also a speech therapist at CHOP who worked closely with us, helping Bella with her feedings.

After navigating the storms of the first year of Bella’s life, she got much stronger with each passing year. My dear sister Kathy and her husband, Mike, were a constant source of help and guidance for us. They are both physicians, and their medical advice helped us through some tough times. We call Mike “Dr. House,” because he’s brilliant and will never stop researching and putting all the pieces of a personal medical profile together, as puzzling as it may be, until he’s figured out a solution. It was Mike who sent Rick and me articles from the medical journals after Bella’s birth about the infants in Japan with Trisomy 18 who were doing well. He told us not to give up on Bella.

When Bella was three, I received a call from Mike. He asked if we had ever had Bella’s IgG (immunoglobulin) subclass levels checked. I told him that when Bella was seven
months old, her IgG levels were checked, but not the subclass levels. He had, once again, taken the time to do some research on children with Trisomy 18 and discovered they tend to have low immunoglobulin subclass levels.

Immunoglobulins, also known as antibodies, are an important part of our immune system; they neutralize bacteria and viruses. They are divided into a number of classes and subclasses that are found in different areas of the body, each having a unique biological function. Our immunoglobulins play several roles in fighting infections, and if any of the levels are low, a person can have repeat infections. This research would end up being crucial for our Bella.

After Bella’s first year, she was stronger, and we settled into a new life with her. Bella was a happy baby girl, and our family doted on her. She was constantly held and cared for and loved. Unfortunately, she got several respiratory infections every year, including a few confirmed cases of pneumonia. It seemed as though we would get through one infection and soon after, despite our hand washing, clean home, and keeping her away from anyone who was sick, she would be sick again.

When Bella got sick, she would decline and go into what we called a
death spiral
. Her illnesses always started with a runny nose that spread to her lungs within a few days, no matter how much suctioning and how many treatments we were doing. She would take shallow breaths, have apneas, and not ventilate properly. She would get tachycardic, and together, Rick and I would somehow manage to get through the long, stressful, emotional, and sleepless nights. The worry made me
feel as though I aged twenty years every time Bella was sick, and it was during these times that I would pray constantly:

For thou didst form my inward parts,
thou didst knit me together in my mother’s womb.

I praise thee, for thou art fearful and wonderful.
Wonderful are thy works!

Thou knowest me right well;
my frame was not hidden from thee,

when I was being made in secret,
intricately wrought in the depths of the earth.

Thy eyes beheld my unformed substance;
in thy book were written, every one of them,

the days that were formed for me,
when as yet there was none of them.

How precious to me are thy thoughts, O God!

(Ps. 139:13–17)

Together, Rick and I would pray and ask our Lord to hold Bella in His loving arms and heal her. God made her in His image, and He knows everything about her. Bella is wonderfully made! In those long sleepless nights, I could feel Christ’s presence. He was there guiding and comforting us, and He always healed His little angel. It was remarkable that even in sickness in the middle of the night as the moon shed its light through Bella’s window, she would look up at us, beaming with smiles as if she were an angel.

We made many trips to our local pulmonologist office in Bella’s first few years of life. The physicians there were smart, thoughtful, and kind. They always did a complete medical
assessment with Bella and listened carefully to her lungs, and they were attentive to her and responsive with ordering her medications. The nurses responded to my calls right away and were very helpful. This established pattern of repeat infections, however, was a red flag that something might be off with her immunoglobulins.

I like to think it was just an oversight, and not because of Bella’s diagnosis, that a simple blood test to check her immunoglobulin levels had not been ordered. Whatever the reason, I forgive them and know that we are all human and make mistakes; in addition, I understand that there’s still so much to learn in medicine. Thankfully, my brother-in-law, Mike, took the time to research this issue and urged me to have Bella’s levels checked. He wrote a letter to Bella’s pediatrician and pulmonologist discussing the studies he had found. I talked with our pediatrician about it, and he appreciated the information and ordered the test.

The results of Bella’s blood test confirmed that she did have a severe deficiency with both her main immunoglobulin levels and also one of her subclass levels. Rick and I immediately took Bella to the immunology department at the Children’s Hospital of Philadelphia. As always, the CHOP physicians could not have been more wonderful. Bella saw Dr. Jen Heimall and Dr. Kathleen Sullivan. They did a thoughtful and thorough exam and ordered another blood test. We talked at length about immunotherapy and its benefits and drawbacks. After several discussions we decided that, given Bella’s pattern of repeat serious infections with bronchitis and pneumonia, she would benefit from immunotherapy.

Bella received the first infusion up at CHOP, and they
taught Rick and me how to administer it. The infusion is given through a very small subcutaneous needle, not an IV, so I give it to Bella once a week. For three years I’ve been giving Bella her Hizentra (immunoglobulin) therapy here at home, and it has completely changed her life! Bella got off all her daily medications and treatments. She went from being a little girl who was frequently sick and congested to being consistently healthy and able to breathe well. Because she could breathe well, she began sleeping through the night and had a lot more energy during the day.

Her occupational and physical therapists noticed a big difference in Bella’s energy levels during her therapy sessions, and as a result she’s progressing much better with her fine and gross motor skills. The Hizentra immunoglobulin therapy has made literally a night and day difference in Bella’s life! We are rarely at the doctor’s office anymore. When Bella does get sick, instead of doing her death spiral, she gets better quickly. It’s amazing the difference in my little girl. Rick and I will always be so grateful to Dr. Mike Lamb for taking the time to care and to the physicians at CHOP for taking such great care of Bella!

The difference in Bella’s life and the life of my entire family is so huge and significant with the immunoglobulin therapy. Any child who presents with frequent infections and establishes a pattern of sickness is evaluated for numerous things. When different medications and treatments are tried but are ineffective in preventing future illnesses, eventually a patient’s immunoglobulin levels should be checked. It might just be a lifesaver.

10
LOVE IS UNCONDITIONAL

•
Rick Santorum
•

[T]he Lord appeared to him from afar.
I have loved you with an everlasting love;
therefore I have continued my faithfulness to you.

—JEREMIAH 31:3

A
few years back, I was having lunch to catch up on the life of a young man who was on my staff when I was a US senator. When the conversation turned to his marriage, he said, “I am not getting what I want out of my marriage.” I responded, “Good!”

My reaction startled him, so I went on to explain that marriage is a sacrificial relationship of giving yourself to your spouse, not a business contract for a delivery of needed goods and services. His understanding of marriage is widely accepted and often the reason for the high divorce rate. Today, marriage is all about “what I get,” and not about “what I can give” to my spouse and our marriage.

I know a man who is on his fifth marriage. He sums up the contemporary view of marriage rather bluntly, “If my marriage contract isn’t performing, then I cancel the contract and find another partner to marry.” To him, marriage is about romance, pleasure, and companionship. All very important aspects of marriage, but like any contract it is not just about what you receive; it’s what you give, like commitment, caring, self-sacrifice, and unconditional love. These are just some of the ingredients that make marriage different from other relationships. It’s also why every civilization since Adam and Eve has had some recognition of this special relationship between men and women that is both unitive and procreative.

Karen and I are blessed with a great marriage. We are best friends, partners, parents, and lovers, but most important, we follow and base our marriage on a vow we made to God. We are far from perfect in any of those relationships, but because our marriage is built on our love of the Lord, the faith and teachings of the Church, and our commitment to do our best to live in the Word, it’s made all the difference. We see Jesus as the model for us in marriage as in everything. He gave Himself fully to His Church with sacrificial love never before or since seen. He calls everyone in marriage
to give of himself or herself fully to love and serve, just as He has done for us.

As is evident from our story, our marriage, like all marriages, is a work in progress. We fall short daily, but we get up the next day and ask for grace to do our best to love and serve Him through our most important and sacred vocation, our marriage. We realize our marriage is about more than us. Of course, our children are greatly impacted by the state of our marriage, but so is my business, our circle of friends, and in our case, the public. Karen always says, “The most important gift we can give our children is a good marriage.” It’s also a great gift to the world around us.

We both were blessed by having great role models. Karen’s parents were in their sixty-seventh year of marriage before Karen’s dad passed away in 2013, and my parents, who didn’t marry until they were in their midthirties, made it to fifty-five years before my dad died in 2011. Their relationships were very different; Karen’s parents were college sweethearts and lovingly devoted to each other and their marriage, and my parents were a tough, career-driven couple. Our parents were well-educated, hardworking survivors of the Great Depression and World War II, and both couples had a full understanding of marriage and the kind of love that is necessary for its success.

Our marriage is built on the solid foundations of our faith, but tragedy shakes your faith. The death of a loved one can even crack the foundation. Losing a child or having to deal with a child with severe disabilities can topple the entire edifice you have built. It can also destroy a marriage, as we have seen, living in the world of families with disabled children.

Bella’s arrival did shake our faith at first. How could it not? We had just finished sixteen years of intensity in the House and Senate, culminating in a humiliating loss by a huge margin. We had just moved into a new home. We were juggling homeschooling the younger kids while shuttling the two older ones to high school. I was trying to discern a new career path, while trying to earn enough money to support the family for the time being. And we had a new baby who could die at any moment and who would require constant care for however long she lived. A new home, new job, new schools, new baby: any one of these presents huge stress. Naturally, we asked, “God, why us?” Why would God take another baby from us? How could the God who loves us unconditionally give us another heavy cross?