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Hannah's Story
As told by her mother, Mrs. Wendy Corder

When Hannah Elizabeth Corder was born on October 2, 1993, we had no idea what lay in store for her.

After a normal pregnancy and delivery, it was devastating to hear the news that Hannah had been diagnosed with the fatal pediatric disease, Cystic Fibrosis, at just 2 days old. The next 13 days in Neonatal ICU were a blur for our family, while learning the specifics of the disease, learning to care for a sick child, and realizing what the future might hold. Anytime you are faced with life trauma of this magnitude, you go through a process of shock, disbelief, and coming to terms with what you must face. Our family was no different.

The hospital insisted that we learn as much as possible about Cystic Fibrosis (CF). Reluctantly, we started our quest. We learned that CF is a genetic disease, meaning that the genes for it are passed on from the parents. We also learned that both parents must have the CF gene for a child to be born with the disease. Neither of our families had any idea that we were carriers of this gene. We also were told that the life expectancy of our child would be approximately 23 years, although that statistic is much increased since that time. We learned that great strides were being made in the research of cures and treatments for CF. This disease most affects the lungs of its victims. The CF gene causes fluids in the body to be thicker, which causes problems with lung infections, digestion and dehydration.

At first we did not accept the diagnosis and insisted that there must be some mistake. After all, we had a perfectly healthy 7-year-old at home. Days later, after realizing that there was no mistake, we began reconciling our faith with the realization that, yes, God had allowed this to happen. As Christians, you are taught, and teach, that it is possible to trust God in and through all things. When you are faced with that in real life terms, the real trust is in living it out.

After many sleepless nights and tear-filled prayers, I can remember a specific time in the NICU with Hannah. I often sang to her when I was allowed to hold her. On this day, I was having an especially hard time keeping my emotions in check. In my mind I was crying out to the Lord and reminding Him that He had promised in His word that He would not put more on us than we could handle. I was feeling overwhelmed. I was telling the Lord, “This is too much for me!” At that moment, God spoke into my heart. His words to me were, “Why are you so worried? I love her more than you do.”

Suddenly, a great peace came over me. I composed myself, and continued quietly singing songs of faith and praise. From that moment on, I never questioned God’s purpose in allowing this to happen to Hannah. I was assured that God was in control, and that everything would be done according to His purpose for Hannah’s life. There have been countless times that I have referred back to that moment over the last 14 years. Over and over again, I have to remind myself that this struggle is not ours, but the Lord’s.

The next seven years of Hannah’s life were a series of doctor visits, increasing medications, and hospitalizations. She was hospitalized multiple times for dehydration and abdominal pain. She learned to swallow pills at the age of 4. She was required to take several capsules of pancreatic enzymes every time she ate to help her digest her food. Before this time, the enzymes were mixed with baby formula or placed in applesauce. She constantly struggled to gain weight and grow. At nine months old, she was still in newborn clothing. By the age of 5, she was wearing toddler size 2.

The most noticeable thing throughout her childhood, though, was not her illness. She had a constant smile and an amazing attitude. She had understanding of things beyond her years. She somehow seemed to be able to accept bad news with grace and dignity. I am not saying that she never cried, or that she always was happy about her illness – but I am saying that she handled it with much more maturity than I would have ever expected her to. Somehow, even at that young age, she had determined that her illness would not define her. She was Hannah and God loved her – and that had nothing to do with Cystic Fibrosis.

One of Hannah’s doctors asked her a direct question when she was about 6 years old. I don’t remember the question, but Hannah’s response contained a reference to the fact that she wasn’t worried about it, because God was going to take care of her. The doctor responded, as he was walking out the door, by telling Hannah that God was going to allow him (the doctor) to take care of this for Him. When the door was closed, Hannah looked at me and said, “He just doesn’t understand, does he?” And I answered, “No, Hannah, he doesn’t.”

At the age of 7, while still struggling to gain weight, Hannah began to have more problems with her lungs. It seemed that she would catch every cold, sinus infection, or flu that she came in contact with. This is common with CF patients. While the flu is a problem for most people, it would eventually lead to double pneumonia for Hannah.

I have an amazing memory of one of Hannah’s procedures when she was about 8 years old. During placement of an IV, Hannah was under conscious sedation. That means that they gave her a medication to relax her, and that she would probably not remember the procedure. I was allowed to stay in the room to comfort her. During the procedure, Hannah began to cry. She kept saying, “I don’t know why I am crying!” At one point, she looked at the nurse who was placing the IV line and asked, “Am I hurting your feelings by crying? I will try to stop.” It was at that time that I realized, even when she was under stress, Hannah’s focus was not on herself. It amazed everyone in the room.

During a routine visit with the CF Clinic in October of 2002, it was discovered that Hannah had developed diabetes. Unknown to us, this is another thing that is somewhat common in people with CF. At this point, we had to retrain ourselves to add the routines of checking blood sugars and giving Hannah about 7 shots per day. Because of her struggle to gain weight, she was not limited on her sugar intake, but we had to constantly adjust her insulin levels to cover high calorie meals and snacks. Diabetes is especially hard to control during times of illness. I remember one day in particular, Hannah was not feeling well and I was getting ready to give her a shot to bring down her blood sugar. As I was preparing the syringe, I said to her, “I am so sorry that you have to go through all of this stuff.” Her response to me was, “Don’t worry about it, Mom. It is no big deal.” I looked her in the face, gave her a hug, and said, “Hannah, you are my hero.” She just smiled and laughed.

By the time February of 2004 rolled around, Hannah was 10 years old and on 11 oral medications, 2 kinds of insulin, and 6 aerosolized breathing treatments each day. While the average 10-year-old girl weighs approximately 75 pounds, Hannah struggled to keep her weight above 40. The decision was made to place a feeding tube directly into Hannah’s stomach through her abdominal wall. Although the procedure for this is somewhat routine, Hannah remembers this surgery as being the most painful thing she had endured. For three days after surgery, Hannah barely spoke. It was obvious that she was in pain and very angry about it.

As parents, we struggled to help her cope with the pain and the feelings she was having. Later, she told us that during that time, she was angry at God because of everything that was happening to her. Her young mind was having a hard time believing that a God that loved her would allow her to go through such pain. She told me that she realized later that God had helped her, or she would have never been able to endure it. This experience also placed compassion in her heart for others that are in pain.

In the few months after her surgery, it was becoming increasingly obvious that Hannah’s liver was not functioning correctly. We were told that cirrhosis of the liver affected a small percentage of CF patients. Unfortunately, Hannah fell into this small percentile. More medications were added to her daily regimen, and we kept a close watch on levels related to her liver. She was having blood work done every three months. Every six months, she would have procedures done to ensure that her liver problems would not cause excessive bleeding in different parts of her body. She had other tests to see how her liver failure was affecting her heart and bones.

But while a close watch was kept on her liver, the other aspects of her CF were not at rest. Sinus and respiratory infections required frequent rounds of IV antibiotics. She also had sinus surgery in November of 2004 to remove polyps that had grown and blocked her sinus cavity. Through it all, her spirit was bright and her attitude remained upbeat. One visit to the doctor stands out in my mind. We were waiting in a treatment room for the results of some blood work that Hannah had done. The doctor came into the room and told us she had bad news. She told Hannah that she was going to have to have more blood work and have an IV placed for some antibiotic treatment. Hannah’s response was, “Is that all?! You scared me! I thought you were going to say I had to have something really bad done. That is no big deal!” The doctor threw up her hands and said, “Hannah, you never cease to amaze me! I wish all my patients were like you!”

On September 29, 2005, we admitted Hannah to the hospital for severe nausea, weight loss and problems with hallucinations. Upon admission, the liver specialist informed us that the time had come to evaluate Hannah for a liver transplant. Although we knew it was a possibility, we were hoping that this time would never come.

During the transplant evaluation, it was found that Hannah was much sicker than anyone had realized. We were told that she needed to be listed for transplant as soon as possible. Although she was very sick and could not leave her room, throughout this time, Hannah was excited. She would ask almost everyone that would come into the room, “Did you hear? I am getting a new liver!”

Fortunately, during that 4-week hospitalization, Hannah’s condition stabilized enough for her to be released to wait for transplant at home. If she ever worried about her transplant, she didn’t show it. She remained happy and upbeat. Her attitudes had a profound effect on me and my attitudes about adversity. I was not aware that she was affecting others as well. Hannah attended a large Christian school at the time in Wichita, Kansas. Everyone at the school had been so supportive of Hannah and our family. They had helped us with arranging school work and making things easier for Hannah when she was feeling so badly. At the end of the 2005-2006 school year, we received her yearbook. I was amazed at what I read. I found that the yearbook had been dedicated to two people. One was a retiring teacher. The other, was Hannah. Here is what the headmaster wrote in the dedication:

I was equally amazed at the comments that many of her teachers had left in her yearbook:

That summer, in July of 2006, it was determined that Hannah would most benefit from a dual transplant. By getting a liver and pancreas at the same time, Hannah would be free of the diabetes and her dependence on pancreatic enzyme capsules to help her digest her food.

This combination of transplant is not common, and few have been done in the U.S. We were confident that this was the best solution for Hannah, and she became even more excited at the prospect of no longer being a diabetic. She continued to do well enough that the wait for transplant lasted another year. During the combined two years of waiting, she was admitted to various hospitals 10 times for problems related to her liver disease, dehydration, pneumonia, acute renal failure, and kidney stones.

During her entire life, at any given time, it was not unusual for Hannah to ask us for prayer. She didn’t care who was in the room – if it was time for prayer, they had to wait. I have seen her ignore doctors many times to ask her Dad to pray before a procedure.

It is well known among her doctors that Hannah believes in prayer. On October 22, 2007, our family was summoned to Riley Children’s Hospital in Indianapolis, IN.

A donor had been found for a liver and pancreas. Throughout the two years of waiting, my husband, Mitch, a creative and resourceful person, stayed in frequent communication with a company that flew charter airplane flights. We were on standby 24/7 for those two years. On that October day when the phone call finally came, Hannah explains, “I was at school and was really excited! I was smiling and thrilled that finally it was going to happen. Then, when I got on the chartered plane, I got a little nervous when I knew what was ahead. But I wasn’t scared at all. God really helped me throughout the whole ordeal,” she said calmly.

After arriving at the hospital, our family waited together for almost 11 hours for Hannah to be called to surgery. We prayed together several times, but Hannah never seemed to worry. When the time came to walk to the surgery area, I asked her if she was afraid. She told me, “No – just excited!”

During her 10-hour surgery, we were updated hourly as to Hannah’s condition and progress. After 2 hours in recovery, she was moved into ICU and we were allowed to see her. I was amazed at how well she looked, although she had many tubes and wires attached to her. She spent 7 days in ICU, and another 10 days in the hospital ward. On November 7, 2007, Hannah was released to go to the Ronald McDonald House, where an apartment had been prepared for our family. The doctors told us that they had never released a transplant patient so soon after surgery. Hannah smilingly told the Head of Transplant Surgery, “I’m special!” He was forced to agree.

It has been amazing to watch how quickly Hannah has responded to the dual transplant. Her new pancreas began to work immediately, and her blood sugars have been normal. She no longer requires pancreatic enzymes to help her digest her food. She went from 23 medications before surgery, down to 13. Because her new liver is functioning normally, she has lost the fluid that had accumulated in her abdomen. Although she is still subject to the other aspects of CF, her increased liver and pancreas function reduce their effects. She is steadily gaining weight, and has grown in stature for the first time in many years.

Hannah now says proudly, “I can eat anything I want and have already grown out of two pairs of shoes and two pair of slacks, and have outgrown lots of my shirts!”

She is excited about her progress and has no regrets regarding the transplants. I don’t think she has regrets about much of anything. I don’t think her mind works that way. Her attitude seems to be, “This is what I have been dealt, and so I will deal with it.” I continue to learn about right attitudes and contentment from her every day.

Her biggest dread is having blood drawn every other Monday. “But,” she explains, “soon I’ll be more independent from so many medications and won’t have to lug around a big medicine bag everywhere I go.”

“It’s so great to be back in school with all my friends,” she says. “Renee’ is my very best friend – ever. She calls me often and even sent emails to me the whole time I was in the hospital in Indianapolis.”

Hannah glows when she says “I feel very excited about my future – going to high school – and I can’t wait to go to college. I love animals and want to be a Vet.”

“But right now,” she says wistfully, “I just want to be a normal girl.”

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