Bella's Gift (13 page)

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.

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.