Today is December 12, 2012, the thirty-third anniversary of Holly's diagnosis. In 1979, it was the day before her seven month birthday. Every year since then I have grieved as I remembered the devastation of learning that Holly had cystic fibrosis. This year, however, I have decided to focus on the positive ramifications of that diagnosis.
There's no denying that learning my daughter had a chronic and fatal disease was unspeakably painful, the news was also, in a way, a relief. Now we had a name for the cause of the awful problems she'd experienced, and, with that name, came the knowledge of how to help her.
For seven months, my baby girl had struggled to gain weight and suffered with excruciating stomach cramps. She could only sleep at night if I lay on my back on the sofa with a hot towel between our tummies to ease the pain.
Holly was a beautiful baby from the time she was born. At the nursery window in the hospital, her daddy's friend had to make a way for him through the group of people crowded around in front of her bassinet to admire this lovely little girl. However, some days her healthy pink color would change abruptly to a deathly gray, which would snatch my breath away.
Most babies have a sweet scent that adults love. I noticed very early on that Holly didn't smell sweet at all even immediately after a bath. For some odd reason, that little detail made me very sad. Perhaps, it forced me to face the fact that something really was wrong with my precious baby girl. I also observed that she tasted salty when I kissed her, and, when she cried, her tears left tracks of salt behind on her cheeks. Unfortunately, I was unaware of the significance of that one fact, so I told family members but never mentioned it to the pediatrician.
At seven months old, she had only recently begun to eat more than rice cereal. However, because her body didn't produce the enzymes necessary to produce her food, no matter how much she ate, her little tummy never felt full. The amount of food she consumed was astonishing considering her age. No matter how much I fed her, she always cried for more. It had gotten to the point that her plate of food equaled mine, and she still didn't gain weight. When I fed her eight ounces of formula, she would scream for more. But, I quickly learned that if I gave her more, she threw it up, because it was too much for her little tummy. She was malnourished and weak.
Finally, on Dec. 12, my big sister called and forced herself to overcome her fears of offending me by telling me that I must call Holly's pediatrician and insist on a sweat test. God's perfect timing made me open to what she had to say; I had read an article the day before mentioning that the taste of salt on babies often indicated a disease I knew little about called cystic fibrosis. She instructed me to hang up from talking to her and immediately call my doctor. As we talked, he started in with his usual arguments until I interrupted him, saying, "But she tastes salty." He responded, "Oh, my god. I'll call Children's Medical Center immediately to set up a sweat test." I wrote about that day in my previous blog post.
Though the diagnosis was devastating, the good news was: now we knew there were treatments to help her. The lung disease, which had not caused problems yet, could be slowed. What a relief we experienced when we learned that, by using pre-digested formula and artificial enzymes to digest her food, the awful stomach cramps would stop immediately! She would gain weight!
Our guilt and frustration over our inability to help our daughter were instantly relieved with the knowledge that we could help her. Yes, we were forced to face the long-term realities of CF, but part of the reality was that the treatments available were going to make her better.
And they did. At that time, when children were diagnosed with CF, they were immediately admitted to the hospital. Actually, we were told that the whole family was being admitted in order to learn about CF and how to care for her. The nurse brought Holly's first bottle of pre-digested formula and told me that it smelled and tasted awful. I smelled it and decided to take her word on the taste. She said that Holly probably would refuse it until she figured out she wasn't getting anything else. She was wrong. I took Holly in my arms, offered her the bottle and, instead of refusing it, she sucked it down, hardly breathing, because she was so hungry. When she finished the bottle and I set it down on the counter, she smiled! The nurse was as incredulous as I. Holly smiled at the bottle, because, for the first time her seven-month-old life, her tummy was full. My heart burst with happiness and relief.
In the first month after her diagnosis, Holly gained two pounds. Two pounds! She gained energy. Our nights on the sofa with the hot towel ended. Now, we could put her down to sleep in her crib with a full tummy.
Of course, we struggled with the realities that the average life expectancy was only 18 and the problems that would inevitably be part of her life. We had no way of knowing that, at 33, she would be married with an amazing daughter and still doing well.
So with that perspective, today on the thirty-third anniversary of her diagnosis, I've decided to celebrate. As Holly put it, "Instead of a death knell it was a starting gun." What could I possibly add to that?
Showing posts with label The Diagnosis. Show all posts
Showing posts with label The Diagnosis. Show all posts
Wednesday, December 12, 2012
Saturday, August 15, 2009
The Diagnosis
Please forgive me for taking so long to post again. I've been avoiding it, since this is a painful topic to think about, and writing of it truly takes a lot out of me.
My cousin, Bettilu, joined me on December 12, 1979 to take Holly to Children's Medical Center in Dallas for a sweat test, still the definitive diagnosis for cystic fibrosis. The techs took each of Holly's little forearms, scrubbed them clean with alcohol, then attached electric probes that would emit a small electric shock -- just enough to tickle a bit -- to stimulate the sweat glands. Next they used plastic wrap to attach cotton pads that had each been previously weighed. They wrapped the plastic wrap tightly around her arms several times, again to stimulate sweat. Next, we spent 30 minutes entertaining my little seven-month-old, waiting for her to sweat enough onto the pads so they could be tested for their chloride content. When the timer signaled the end of the 30 minutes, they weighed the pads to determine whether they contained enough chloride for the test. They did.
Leaving the hospital, my fears began to mount. Just in the past few days, I had learned about cystic fibrosis and found it difficult to believe that my precious daughter could have something so awful -- a disease that could threaten and take her life. Surely not. Surely, it was something else, a much more palatable explanation. An explanation we could live with, literally. But then, I would recount each of the symptoms and how they all added up to one diagnosis -- cystic fibrosis. Before I had read the article earlier in the week, written by a mom whose daughter had died of the disease, I had said something like, "Isn't that the disease Jerry Lewis raises money for?" Clearly, I knew nothing. But, thankfully, Bettilu took my mind off my fears and turned my attention toward a more practical and mundane matter, such as lunch. She decided to treat me to one of the finer tea rooms in Dallas. The maitre d' was not thrilled to admit a little one to his swanky place, but not many people argued with Bettilu and won. We were shown to a table. I have no idea what I had for lunch, but I remember clearly that Holly had strained peaches. Since this esteemed establishment kept no high chairs on hand. I had to feed her while holding her squirmy little self on my lap. Never an easy task with little one who'd been cooped up too long and who just wanted to get on the floor and crawl around. When we were finished, I went to the Ladies' Room. Finally, washing my hands, I looked into the mirror and realized that my face was covered with little, hand-sized smears of strained peaches. I laughed out loud in the privacy of the Ladies' Room and felt a sense of relief from the strain of the morning.
Bettilu took us home and was determined to stay with us until Holly's daddy came home from work. She was not about to leave us alone. Late in the afternoon, I got antsy. I told her that there was no way I could sleep that night without knowing whether the test was positive or negative. So, I began making phone calls to my pediatrician's office. He was out for the day, so I left messages for his colleague who was covering. I was about to give up on his returning my calls when the phone rang. (My heart is beating faster even now as I write this and remember.)I answered the only phone in our tiny house, which was in what my son-in-law would call our "one-butt kitchen." I faced Bettilu as the physician introduced himself and told me that he had the results of the test. He asked what I knew about cystic fibrosis. I said something like, "Well, I know it affects digestion and they have to take some kind of pills to digest their food." He replied, "That's true, but there's so much more than that." Without asking if there was someone with me or checking on my emotional state, he informed me that children with cystic fibrosis die -- always. He said it was possible she might live to go to school, but it was much more likely that she would die before she was two. I collapsed against the stove. I heard in the phone, "Mrs. Shute, Mrs. Shute? Are you there?" I had lost the ability to speak as I went into a kind of emotional shock. I remember thinking, "This is what a tidal wave must be like," as I was hit with overwhelming grief that washed over my body. The grief was so intense that I really thought I would die. Instead, I felt myself shutting down. It started at the top of my head and worked its way down through my body, removing all emotion so that I could survive. I finally found my voice and responded to him, asking what we should do next. He instructed me to bring Holly to the office the next morning to see our own pediatrician.
I didn't cry. I was too much in shock to feel. I simply looked at Bettilu and told her that it was time to fix dinner. I couldn't think of the reality of the doctor's words as my beautiful Holly lay sleeping unaware in her crib.
My husband came home from work, blissfully ignorant of what I'd just been told. I reported the news to him just as it had been reported to me. He looked at me, said, "We dedicated her to God, we can't take her back now." Then he walked quietly out of the kitchen into our bedroom and slammed the door. He stayed there alone for hours.
If I had thought that I could not sleep without news of the diagnosis, I certainly could not sleep with news of the diagnosis. I stood over Holly's crib for a long time, just watching her breathe, wondering how this largely unknown -- to me, at least -- disease could be stealing her away one breath at a time, even as I watched.
The next morning, we visited our pediatrician, who was pale, subdued and apologetic. He'd missed it. For those many months that he'd told us there was nothing wrong, CF had been doing its thing -- causing her to scream at night from stomach cramps, endure constant hunger because her food was not digested and feel the weakness from a lack of nutrition -- and he could have prevented it.
He asked what his colleague had told me and was appalled. He apologized again, and said, "Cystic fibrosis is bad, but there is some hope. Let me tell you the truth about it," and he proceeded to do that. We breathed a tiny sigh of relief to learn that the average life expectancy was 18 and that she would surely live to go to school.
He also told us that Children's Medical Center right here in Dallas had an excellent CF center where she could be treated and that their protocol was to admit those recently diagnosed. He promised to make the arrangements and called later in the day to tell us to take her in on Saturday for that was the first day they would have an open bed. We thanked him and set about making the painful calls to family and friends.
My cousin, Bettilu, joined me on December 12, 1979 to take Holly to Children's Medical Center in Dallas for a sweat test, still the definitive diagnosis for cystic fibrosis. The techs took each of Holly's little forearms, scrubbed them clean with alcohol, then attached electric probes that would emit a small electric shock -- just enough to tickle a bit -- to stimulate the sweat glands. Next they used plastic wrap to attach cotton pads that had each been previously weighed. They wrapped the plastic wrap tightly around her arms several times, again to stimulate sweat. Next, we spent 30 minutes entertaining my little seven-month-old, waiting for her to sweat enough onto the pads so they could be tested for their chloride content. When the timer signaled the end of the 30 minutes, they weighed the pads to determine whether they contained enough chloride for the test. They did.
Leaving the hospital, my fears began to mount. Just in the past few days, I had learned about cystic fibrosis and found it difficult to believe that my precious daughter could have something so awful -- a disease that could threaten and take her life. Surely not. Surely, it was something else, a much more palatable explanation. An explanation we could live with, literally. But then, I would recount each of the symptoms and how they all added up to one diagnosis -- cystic fibrosis. Before I had read the article earlier in the week, written by a mom whose daughter had died of the disease, I had said something like, "Isn't that the disease Jerry Lewis raises money for?" Clearly, I knew nothing. But, thankfully, Bettilu took my mind off my fears and turned my attention toward a more practical and mundane matter, such as lunch. She decided to treat me to one of the finer tea rooms in Dallas. The maitre d' was not thrilled to admit a little one to his swanky place, but not many people argued with Bettilu and won. We were shown to a table. I have no idea what I had for lunch, but I remember clearly that Holly had strained peaches. Since this esteemed establishment kept no high chairs on hand. I had to feed her while holding her squirmy little self on my lap. Never an easy task with little one who'd been cooped up too long and who just wanted to get on the floor and crawl around. When we were finished, I went to the Ladies' Room. Finally, washing my hands, I looked into the mirror and realized that my face was covered with little, hand-sized smears of strained peaches. I laughed out loud in the privacy of the Ladies' Room and felt a sense of relief from the strain of the morning.
Bettilu took us home and was determined to stay with us until Holly's daddy came home from work. She was not about to leave us alone. Late in the afternoon, I got antsy. I told her that there was no way I could sleep that night without knowing whether the test was positive or negative. So, I began making phone calls to my pediatrician's office. He was out for the day, so I left messages for his colleague who was covering. I was about to give up on his returning my calls when the phone rang. (My heart is beating faster even now as I write this and remember.)I answered the only phone in our tiny house, which was in what my son-in-law would call our "one-butt kitchen." I faced Bettilu as the physician introduced himself and told me that he had the results of the test. He asked what I knew about cystic fibrosis. I said something like, "Well, I know it affects digestion and they have to take some kind of pills to digest their food." He replied, "That's true, but there's so much more than that." Without asking if there was someone with me or checking on my emotional state, he informed me that children with cystic fibrosis die -- always. He said it was possible she might live to go to school, but it was much more likely that she would die before she was two. I collapsed against the stove. I heard in the phone, "Mrs. Shute, Mrs. Shute? Are you there?" I had lost the ability to speak as I went into a kind of emotional shock. I remember thinking, "This is what a tidal wave must be like," as I was hit with overwhelming grief that washed over my body. The grief was so intense that I really thought I would die. Instead, I felt myself shutting down. It started at the top of my head and worked its way down through my body, removing all emotion so that I could survive. I finally found my voice and responded to him, asking what we should do next. He instructed me to bring Holly to the office the next morning to see our own pediatrician.
I didn't cry. I was too much in shock to feel. I simply looked at Bettilu and told her that it was time to fix dinner. I couldn't think of the reality of the doctor's words as my beautiful Holly lay sleeping unaware in her crib.
My husband came home from work, blissfully ignorant of what I'd just been told. I reported the news to him just as it had been reported to me. He looked at me, said, "We dedicated her to God, we can't take her back now." Then he walked quietly out of the kitchen into our bedroom and slammed the door. He stayed there alone for hours.
If I had thought that I could not sleep without news of the diagnosis, I certainly could not sleep with news of the diagnosis. I stood over Holly's crib for a long time, just watching her breathe, wondering how this largely unknown -- to me, at least -- disease could be stealing her away one breath at a time, even as I watched.
The next morning, we visited our pediatrician, who was pale, subdued and apologetic. He'd missed it. For those many months that he'd told us there was nothing wrong, CF had been doing its thing -- causing her to scream at night from stomach cramps, endure constant hunger because her food was not digested and feel the weakness from a lack of nutrition -- and he could have prevented it.
He asked what his colleague had told me and was appalled. He apologized again, and said, "Cystic fibrosis is bad, but there is some hope. Let me tell you the truth about it," and he proceeded to do that. We breathed a tiny sigh of relief to learn that the average life expectancy was 18 and that she would surely live to go to school.
He also told us that Children's Medical Center right here in Dallas had an excellent CF center where she could be treated and that their protocol was to admit those recently diagnosed. He promised to make the arrangements and called later in the day to tell us to take her in on Saturday for that was the first day they would have an open bed. We thanked him and set about making the painful calls to family and friends.
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