The Two Million Dollar Red Head A testimony of God’s grace through the storms of life
By John “TC” and Joanne Megahan
This is a story of a family and their faith. It is a real story about real people who faced real problems. It is also a story about family, friends and a God who gives grace in the most difficult storms of life. The Megahan family is not your ordinary family, there’s a Mom, a Dad and 9 children. Yes, you read that right, nine children. Some love to say, "It takes a village", but, for the Megahan family, we are a village. We are a full litter, and sometimes a herd, but I always preferred a baseball team.
In fact, I loved it when some people gasped at the thought of a family that big. Many people will ask Joanne how she did it, but she always seemed to make it sound easy...almost natural. "They didn't come all at once," she always said. "I had them one at a time." Family was our first and often our only priority. No, we didn’t have boats, fancy cars or vacation homes at the beach. We simple had each other, and that was always enough.
The downside of a big family like ours? You had to share a bedroom, a bathroom, clothes, toys and sometimes even your name. If Joanne wanted to call one of the boys in from the back yard, it often sounded something like John-Brand-Justin…and finally she would just give up and say “all of you boys, come in now!” The kids just got used to being called by the wrong name or by getting lectured for something that one of the others had done. There was no witness protection in our home, everyone understood that and accepted it.
At school, the teachers always knew the younger children before they even met them. "I had your brothers a few years ago", they would say that first day of class. This could go both ways and I know it worried the younger girls especially. “Which one?” they would ask nervously, hoping it was the quiet brother, or the studious one, and not the known to be the class clown? This made a difference.
Yes, we had our battles as a family, we argued, fussed and fought like every other family. Only our disagreements looked more like a session at the United Nations with everybody taking and trying to make their point. But, for the most part it was a calm and quiet home despite our size, mix of genders
and large range of ages. One ongoing battle that always made me smile was when someone would leave their seat on the couch to use the bathroom. Suddenly the entire room looked like the championship round of musical chairs as everyone jockeyed for a better position. Youâ€™d try to get it back when you returned, but it never worked and you lost it for the entire episode of "Teenage Mutant Ninja Turtles." Mom and Dad were never granted any exception to this rule, and we all learned to hold our bladders for exceptionally long periods of time, just to keep our place on the couch.
The upside of being a member of the Megahan family? You could always find someone to play with, someone to talk to and someone to blame for breaking mom's favorite vase or picture. You were taught to sacrifice for a greater good. It was we, not me. Everything belonged to everybody, like it or not. You looked out for each other without asking. You developed inner radar. Grew eyes in the back of your head. If fact, the children help raise each other. They would change diapers, feed the younger babies and read each other stories. They grew up to be each otherâ€™s best friends.
We learned so very important lessons from managing a litter of that size. Lessons like, keep your friends close, but keep your family closer. You live and die by the buddy system. There was always enough to go around, and if there wasn't, you didn't really need it. We practiced a sort of selfless nonattachment to material things. Toys, clothes and all things were communal. They routinely got worn out, lost, or broken. It was a crowded childhood in the Megahan family, but I dare say that it was a rich one. We made it through good times and bad, through wonderful abundance and occasionally great need, but most importantly we made it through as a family.
Joanne and I want to share the story of our family to encourage and strengthen others who may be facing some of the very same storms we endured. Hold fast to these truths contacted in scripture:
â€œFor I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end. Then shall ye call upon me, and ye shall go and pray unto me, and I will hearken unto you. And ye shall seek me, and find me, when ye shall search for me with all your heart.â€? Jeremiah 29:11-13 (KJV)
NOW PLAYING CENTER FIELD
Three things were abundant in our house every day, our faith, our children and our love of baseball. Since I was serving as the team Chaplain for our local minor league baseball team, we were always surrounded by the players, coaches and family members. Some stayed in our home, many visited and played video games with the children, and all of them became our lifelong friends. So, it was no surprise that when we that my wife Joanne and I were expecting a newest addition to our team, that I created a birth announce that read “Now playing Centerfield’ and had a baseball theme.
It was no secret that Joanne and I both wanted a little girl to kind of even things out around the house. We had plenty of baseballs, footballs and fire trucks. We had piles of blue jeans, t-shirts and sneakers, but what we really wanted was more pink dresses with ruffles, and frilly hair ribbons. The men were running the house at this point, and our oldest son was 16 now and starting to drive. Our family of 6 boys and now 2 girls were growing up fast. All of the children played a wide variety of sports and loved music. They were active in school, church and in our community. We were blessed beyond understanding and felt that we were leading a charmed life. We didn’t have everything, but we had enough. We were enjoying great ministry opportunities, my secular work was going very well, and God’s blessing was evident in every part of our life. It seemed like we didn’t have a care in the world, boy were we wrong!
Joanne and I were old hands at this by now, we knew the routine. Go to the Ob/GYN, get some tests, have a few ultrasounds and then let Joanne deliver a perfect new baby. We had been through this process eight times already, with seven different Doctors at seven different hospitals. But, this time it was routine, this time would be very different for our family.
Our first indication that something was not right was when we had our first ultrasound of the pregnancy. We knew something was wrong with our baby when the technician was not able to see the
baby’s heart during the routine 10-week ultrasound. The heartbeat was weak and barely audible, and she had a look of confusion and fear on her face. I cautiously asked the technician why we couldn’t see the heart, and she said it was because ‘something’ was in the way. “Something?” I said, “What does something mean?” She said she wasn’t completely sure what it meant. She would have to find a specialist to come and speak to us about the “something.” More than one and a half hours passed by as we waited for the specialist to come to the room. Joanne was lying on the bed trying to remain calm and comfort, but I was climbing the walls every minute of our wait. Finally, the technician appeared with a Doctor who took over the exam, carefully watching the fuzzy black and white image on the screen. He too looked confused and concerned as he tried from every angle to achieve a clear picture of the baby’s chest.
“Mr. and Mrs. Megahan”, the Doctor said, “we have discovered an anomaly in the baby’s chest, something that is blocking our view of the baby’s heart”. There was that word again “something.” What was this something that they were talking about? The Doctor was honest and said, “we cannot know without further tests, and we are not capable at this hospital to do the kind of tests needed to answer those questions. You are going to need a pediatric heart and lung specialist.” Our hearts sunk and we left the hospital that day with a cloud of anguish and fear hanging over our heads. All we knew was that our baby had a “something” and that we needed to find a specialist to find out more. No matter how you look at that, it didn’t sound good. Babies were supposed to have “something’s” in their chest, they were supposed to be perfect in every way.
We picked up the kids at school, and told them of the “something” that the hospital saw. The children sense our fears and worry, and we rode to our home in an unusually silent minivan. When we arrive at the house, Joanne went upstairs to rest and get her thoughts together. The older boys prepared dinner as the younger ones played, and we tried to go about life as usual. I grabbed the telephone and began calling a number of my friends in the medical field. I need help and guidance, and I just didn’t know where to turn. Most had never heard of this “something” that was blocking the view of the baby’s heart, but most of them said the same thing. “Go to Children’s Hospital up in Philadelphia, they are the best in the area and they should know something.”
Children’s Hospital of Philadelphia
I did not hesitate a moment in contacting Children’s Hospital in Philadelphia, and after several long holds and frustrating “let me transfer you”, I finally spoke to someone in the Thoracic Surgery Department. I did my best to explain what we had just experienced at the ultrasound lab, and I informed them of the files and records that the Doctor had given me for a Specialist. I was determined to insist on an immediate appointment for an exam, even if I had to be uncharacteristically pushy. I didn’t have to, as soon as I explained the situation the young lady on the other end of the phone said, “Can you and your wife be here at 8:30 tomorrow morning?’ The sense of urgency in her voice added to my fears, and the fact that I was speaking to someone in the Thoracic Surgery Department hadn’t escaped my mind. The words Thoracic and Surgery spun in my head all night as I tried to sleep.
We arrived at the Children’s Hospital with all of the children in tow that day. This was a critical day in our family and we wanted to face it together. We wanted them to understand and be a part of everything in our family, even the tough times. The older boys corralled the younger children and kept them busy playing in the fabulous waiting room. There were toys of all sizes and types and the played and talked to the other children there. Most of them were fascinated by a larger circus elephant decoration on the way, and by the big playhouse in the hospital lobby. Joanne and I were escorted into a brightly painted and cheerfully decorated room to await our “Specialist” who would examine the “something.”
The Specialist came in to our room and began a complete examination and read the file that I had brought from the other hospital. Another more ultrasound was done, and the Specialist confirmed that a large black mass was pushed Cassandra’s heart down and toward the back of the chest cavity and there was no clear sign of her right lung. Her entire chest cavity was filled by the “something” and the baby was in severe distress. We would spend the next 9 hours at the hospital, having many more tests and speaking to several more Doctors. We were exhausted physically and emotionally, but at least now we knew what we were dealing with.
Tests had confirmed what they had suspected. This “something” was a congenital cystic adenomatoid malformation (CCAM) – a large mass – in the baby’s left lung. This rare genetic condition was a recent discovery in the pediatric medical field. Only a few hundred cases had been diagnosed and treated in 1999 for this benign (non-cancerous) mass of abnormal lung tissue that was growing fast and destroying a large part of our baby’s left lung. This condition is caused by an overgrowth of abnormal lung tissue that had formed thousands of tiny fluid filled cysts. If the mass continued to grow and it would become life threatening to the life of baby, and Joanne as well. As the CCAM expanded, it caused a shift in the normal position of the heart, and was it crushing her good right lung. It had begun to compress the blood vessels and was causing the heart to pump harder to circulate the blood. Joanne was also experiencing some signs of what was called “mirror syndrome.” She was growing weaker each day and was “mirroring” conditions of what the baby was experiencing. Our fear was that this condition could possibly lead to heart failure for both Joanne and the baby she was carrying in her womb.
Tough choices of life or death
The Children’s Hospital provided a kind and sensitive Genetic Counselor named Stephanie. She took great care in explaining the grave nature of the condition and informed us that the survival rate was less than 15% at this stage. A large lesion like the one we were dealing with had the potential to cause the development of a condition called hydrops, which could result in the baby’s death due to compromised pulmonary growth. Even if the baby were to survive the next 25 weeks of the pregnancy, the chances of her living a normal life after delivery would be less than 30%. The Counselor explained that due to our current family situation (8 other children) and the potential life threatening risk to Joanne’s health that we may want to consider an aborting the baby to ensure Joanne’s health.
We could also chose to do nothing right now and wait, taking our chances that the CCAM could shrink. It was an unlikely scenario, but it was possible. A third possibility was to have high risk in Utero surgery on the baby. One thing was certain, time was not on our side and we needed to make tough choices very soon.
The first option was heart wrenching. Losing a baby that we had already come to long and care for. Choosing to have an abortion would almost guarantee Joanne’s health, but it just was not a choice we were willing to make at that point. We understood the seriousness of the conditions that the baby and Joanne faced and asked all of friends and family to pray for God’s will in our lives. Our once simple and peaceful lives were now thrown into complete chaos as we contemplated what our future would hold. The other choice of In Utero surgery was very risky and presented a number of other concerns for us. We chose the third choice, which was to wait several more weeks to see if things would improve or if the CCAM would reduce in its size and density.
For the next three months our family life centered on the four times a week day long visits to the different hospitals. We became experts on taking the local train up to the hospital and often made a day of our trips by visiting the local museums and historic sites with the children. Most visits were to the Children’s Hospital, but other Specialists were seem at two other hospitals most weeks, so the children missed a lot of school, and I missed a lot of work.
Not only did the hours at the hospital begin to pile up, so did the hospital and doctor bills. Hundreds of tests, two surgeons and untold numbers of heart and lung specialists were assigned to our baby’s case, and with them came bills, lots of bills. Some many bills that it added additional stress and pressures on the family. One bill alone was equal to my entire annual salary!
We knew we had thousands of people praying for us during our crisis, and we took great comfort in the many cards and calls received from our friends and family. We were also touched at the many expressions of love received during our darkest days. People provided meals, gave toward paying the bills and the students at our children’s schools held a fund raiser to help us out financially. God was busy working behind the scenes for us, as we all prayed for His will.
Right now though, we needed a miracle, or actually many miracles. The situation looked bleak for us, and even the best case scenario didn’t look all that promising. Each visit to the hospital showed that
the mass was either remaining the same or growing slightly, and the baby and Joanne’s condition getting worse with each day that passed.
Dr. Scott Adzick, MD
We were so fortunate and thankful that God had led us to the foremost expert on the CCAM condition, Dr. Scott Adzick. Dr. Adzick was a kind and gentle man with a heart of compassion that I had never experienced before. He was the Chief Surgeon and head of the Thoracic surgery department at the Children’s Hospital of Philadelphia (CHOP), and he explained our limited options. Best case would be carrying the baby full term and having surgery immediately following the baby’s birth. This option seemed unlikely because of the deteriorating condition of both Joanne and the baby. We knew our only real option would be that the CCAM mass had to be removed either during open In Utero fetal surgery. If the In Utero option was necessary, Joanne, at more 25 weeks along in the pregnancy, would be placed under anesthesia. Her uterus would then be surgically opened and the baby would have been partially taken out of the womb so that the mass would be surgically removed. She would have then been returned to the uterus, which would then be closed, and both Joanne and the baby would be monitored closely until her delivery date. Plans were for Joanne to remain in the hospital on bed rest until Cassandra was born. It was very risky operation and would have to be done soon due to the serious condition of Joanne and the baby.
We met several more times with Dr. Adzick and in mid December 1999, we all agreed that In Utero surgery appeared to be the only possible option at the time. Unfortunately New Years 2000 (Y2K) was just a few weeks away and no one knew what issues might happen to the computers and advanced technology equipment. Fears were the power systems and utilities could go down and essential services and equipment would not be able to function properly. The surgery would have to wait until after the New Year since we could not take a chance that the equipment could “crash” while in recovery. Joanne and the baby would be closely monitored several more weeks until the surgery date, and that meant 3-4 ultrasounds each week and a trip to the hospital in Philadelphia almost every day.
Needless to say that it was not a very good Christmas around the normally joyful and active Megahan house. Financially we were devastated and we had to focus on only the absolute necessities to survive each day. Usually Joanne decorates our home beautifully on the holidays, but no one was really in the mood to do much celebrating at the time. We bought a small tree and a few gifts for the children and each other, but gifts and holiday songs did little to brighten the season for us. All we could think about was the possibility of losing Joanne or the baby, and perhaps the unthinkable losing both of them.
We tried to focus on the 3D ultrasound test and the next critical visit to the doctor on December 28th. This was the big pre-surgery test that was to be done at the University of Pennsylvania Hospital, next door to the Childrenâ€™s Hospital. This test would determine the size of the mass in the babyâ€™s left lung and the damage that it had caused. We were preparing for the worst, each previous visit brought more bad news and we expected even more problems this time. Joanne grew more fatigued physically, and the babyâ€™s heart beat sounded weaker each day.
The 3-D ultrasound
On the day of the test, the children stayed at home with good friends from our church, and we headed up early to the hospital. Although the hospital was only 25 miles away, it was a long and hard trip into downtown Philadelphia, especially with Joanne being 7 months pregnant. We were scheduled for the 3-D ultrasound test at 9 am, and then we had a consultation with the surgical team of Dr. Adzick and Dr. Mark Johnson immediately afterward.
This test was actually the third 3D ultrasound that we had during the pregnancy and we had become familiar with the technician who was performing the tests. She was familiar with our situation and knew what prognosis we were facing. On each of our previous visits, we talked of our situation and about our family, but this time I remember that there was very little small talk during the preparation and a sober kind of silence during the test. We had so many ultrasounds during the pregnancy (42) that we were now pretty skilled at reading them. Usually the tests revealed a large black mass in the
chest cavity where the outline of the heart and lungs should be. The ever present “something” was always there. In fact, I grew to hate that “something” that was threatening to take away my baby and maybe my wife.
Maybe because we were both so physically and emotionally wiped out were barely noticed that he test seemed to progress much slower than usual this time. The technician adjusted and readjusted the equipment several times and she seemed confused, twice left the room for long periods of time. Needless to say I was in a panic by now, my mind racing with the potential of more bad news or setbacks. Amazingly, Joanne remained remarkably calm as she laid there on the bed.
Finally after returning from the second trip out of the room, the technician turned the monitor around for us to see. She said she wasn’t completely sure what it mean, she it appeared that the large mass had shrunk to only ¼ of the size it had been. She took the time to show us that the heart that was not visible in the previous exams, was now clearly located exactly where it should be, and that right lung was right there in its normal size and shape. She explained that when she left the room the first time, she had called Dr. Adzick with her findings and he had asked her to verify the test and get the results over to him as soon as possible. Once she had verified the finding, she had actually ran next door with the computer disk and personally delivered it to the Dr. Adzick office for him to view. We finished up and prepared to leave the room, still unclear about what was happening, and the technician unexpected stepped forward and gave Joanne a big hug. She said we had experienced a real miracle!
Our first of many miracles
Although the University of Pennsylvania hospital is right next to Children’s Hospital, it is a large complex that takes some time to get around. As we walked through the hallways our hearts and minds raced with a variety of feelings and ideas surrounding only one question, Where did the “something” go? We talked very little to each others as we made our way from building to building and into Dr. Adzick’s office. Once there we were unsure what to expect. The news had not really hit us yet. It was
something that was pretty hard to get our minds around, even though everyone was praying for a miracle.
One thing I will always remember though, is the big smile that Dr. Adzick had on his face as he greeted us at the reception desk. Usually we registered and took a seat while we waited to see the doctor, but today he was there waiting for us. Almost immediately, he echoed the words of the ultrasound Technician, “looks like you got your miracle” he said, trying to contain his excitement. “The CCAM has reduced in size to the point that In Utero surgery will not be necessary.” Only then did I realize the impact of what had taken place and how it had changed things.
We sat in his office talking for several minutes and then Dr. Adzick ushered us into the conference room that had already filled with many of the faces that we had come to know in our many visits to the hospital. A projection unit had been set up on the table and Dr. Johnson began with showing a slide of a side by side comparison of today’s ultrasound with the one taken 4 days before. Joanne and I could not understand all of the technical and medical terms that the doctors were using, but we did understand the basics. The large mass that was crushing the baby’s heart and right lung, had unexpectedly reduced to ¼ its size. One by one they each shared their findings and various opinions, but they all agreed that and immediate surgery would not be required.
We would have to endure a number of additional tests though, and most of these showed that despite the severe nature of the CCAM cysts, there appeared to be no damage to the baby’s heart and right lung. The blood vessels that were once so severely compressed now showed no damage and everything seemed to be functioning perfectly. Another miracle it seemed, only a few short days before they could not even see them on the previous ultrasound, now they looked like they were working normal.
Still, not all news was good, the baby was a long way from being healthy. A large portion of the baby’s left lung destroyed by the fluid filled cysts and they would still have to surgically remove almost 80% of her left lung. Removing that much of a vital organ in a baby would create new problems for her, and
no one could be sure she was healthy enough to survive on only one lung. There was also a major concern whether or not the baby could be carried full term and if the previously restriction of blood and oxygen had caused damage to her other vital organs or brain. That would mean many more tests and trips to the hospitals. We could catch our breath, but only for a moment, we were still a long way from bringing home a healthy baby girl.
Our original due date was mid February, and only after she was delivered would we know what surgery would be necessary and what issues we would be facing. The next two months were possibly the toughest of them all, because now we faced the fear of many new unknown conditions once again. We would continue to go through much more testing, but we did not know exactly what we were looking for. It was possibly that our baby would suffer for the rest of her life because of this condition and we as a family had to come to grips with the possibility of having to care for a special needs child. None of these questions could be answered until she was born.
It was a wait and see period for us, with one long day at the hospital after another. The days and weeks dragged on, and mid February came and went without her arrival. All of the surgeons, doctors, nurses and specialists were prepared and on standby for her birth. Plans were for Joanne to deliver at either University of Pennsylvania or the Childrenâ€™s Hospital and for the baby to have her surgery as soon as she was stable enough to undergo the procedure. That plan was adjusted several times when she missed her due date and we began another day by day waiting game. In theory, all the Doctors and Specialists agree that it was better for her to remain in the womb as long as she could, grow stronger and healthier. The Leap Day Baby
From the very beginning this little baby wanted to do things different. What nobody anticipated was that we would all have to wait another 2 weeks until leap day, February 29 th for her to arrive. In fact, her late arrival was so unexpected that she would not being born at either hospital where all her surgical team awaited, but at the Christiana Hospital here in Delaware. At Christiana, where we first
began our journey and where nobody was prepared for her unique condition, and with a doctor that we have never met before.
Still, the baby came when she was good and ready despite all of the Specialists and Surgeons waiting for her in Philadelphia. She weighed just over 4lbs, the smallest of all of our babies. We held our breaths as the delivery room Doctor laid her on my wife’s chest. She had the trademark Megahan features and little wisps of bright red hair. Joanne named her Cassandra Rose and she was a beauty. I held her in my arms for the first time and gain her a thorough going over. She had good color, breathing easily and appeared to be strong and healthy.
Another wonderful miracle was that Joanne was completely healthy! She had endured 9 months of personal physical pain and emotional anguish, but God’s hand of mercy was upon her as well. She was exhausted, but showed no signs of the “mirror syndrome” or any complications from the CCAM. In fact, she was incredibly healthy despite her long and difficult ordeal. Once again, we were blessed by another miracle and both Joanne and Cassandra Rose had beaten all of the odds.
Cassandra Rose Megahan
We frantically called the Children’s Hospital and Dr. Adzick’s office and put the two hospitals in contact with each other. Just to be sure, a Life Flight helicopter was put on standby for Cassandra and Joanne as we anticipated the need to fly her up to Children’s Hospital as soon as possible. The children came up to the hospital with some of our family and friends, and soon the small waiting room overflowed with dozens of people.
A portable ultrasound was brought in and a complete exam of Cassandra was done by the Pediatric Specialist and thoracic surgeon from Christiana Hospital. It seemed like hours had went by with her in the exam room where dozens of nurses and Doctors came in and out of. Finally, the Doctor brought her back into Joanne’s room and handed her to her Mommy. To everyone’s relief and joy, she was experiencing no complications or signs of crisis despite the incredible trauma that she had just
After several more specialists and thorough examinations, it was determined that
Cassandra was strong and healthy enough for her surgery. She only had one lung but she exchanged oxygen at an above normal rate, and all of her vital signs were good.
The decision was made to schedule her surgery for immediately following her discharge from the hospital. Each day that she grew stronger improved her chances of surviving the upcoming operation to remove the mass. Dr. Scott Adzick, The Chief Thoracic surgeon lead his team of specialists in the delicate task of surgically removed the cystic mass and the 80% of lung that it destroyed. Then, in an intense and delicate procedure they repaired each severed blood vessel and bronchial tube, it an effort to save the 20% of remaining healthy lung tissue. At one point prior to the operation Dr. Adzick was checked the babyâ€™s monitors for signs of trouble, and baby Cassandra Rose reached up and wrapped her little finger around the finger of the doctor. It was as though she was telling him that she trusted him and was glad to be in his hands. Quickly one of the nurses grabbed a camera and took this shot that we have included below.
For seven hours the team worked on our tiny little baby girl Cassandra, while we anxiously waited in the family room. We had been through the many ups and downs of this emotional roller coaster ride, and now we were coming nearer to the end. At this point we were functioning on pure emotional energy and faith. Our strength came from the prayers and faith from countless thousands of people. We had friends and family in Pittsburgh praying, people in Delaware, Maryland, Pennsylvania and hundreds of other places. Cassandra Rose was being prayed for by thousands of people, many who had never met our family before.
Sometime in the afternoon, Dr. Adzick came into the family room to let us know that Cassandra was doing fine and the mass had been removed, that “something” was out. There were a few unexpected issues, but she was now in the post surgery recovery room breathing on a machine.
The Neo-Natal Intensive Care Unit
After a few hours there in recovery, she was moved up to the Neonatal Intensive Care Unit (NICU) where her progress and condition could be closely monitored around the clock by their remarkable team of nurses. The NICU was a humbling place that was filled with dozens of small bassinet type beds that we always surrounded by doctors, nurse and family members. In each bassinet was a critically ill baby that was connected to so many machines. These were the most critical cases of the hospital and we knew that many of these children were terminal with only a few hours or days to live. Parents stood silent watch over the cribs, watching and waiting in a solemn mood of fear and anticipation. One evening our hearts broke as we watched a Mother and Father weeping together as the stood by the crib of their little baby who had just passed away. Tears were the unspoken language of that unit and we also cried as we watched our little girl laying in that tiny little bed. Her eyes were puffy and draw and she was so pale. She had a little knit cap on her head, but you could still see her red hair peaking through. The incision from the operation was larger than we expected, running half way around her little chest. Tubes went down her throat, up her nose and out of her chest. She was surrounded by complex machines that beeped and whirled as they monitored her every breath, heart rate and blood pressure movement. She even had a little finger monitor to check her temperature.
Joanne also remained in the hospital with Cassandra for the next 8 days, staying in one of the special family room provided by Dr. Adzick’s staff, while I traveled back and forth from Delaware each day. We knew from the beginning that Cassandra was a fighter and had a strong will to survive. She was a Megahan and she was as tough as they came. As expected, she did have a few complications and setbacks during the recovery process, especially since she did not tolerate the pain medication well. One night her good lung collapsed due to a malfunction in one of the machines and a Technician’s error. Several other times her heart rate dropped dangerously low, but even with all of that, she made
a remarkably fast recovery from the surgery. On April 15th, the day most people dread for other reasons, we were rejoicing. Cassandra was finally allowed to go home to her new, very large family that was awaiting her in Delaware.
Home with the family
The tubes were out and the bandages were removed, but she was still very fragile. Childrenâ€™s Hospital sent us home with a variety of breathing and therapeutic equipment, and both Joanne and I learned to clean and replace the breathing tubes that they expected her to need. We also had to come back for additional twice a week visits for the first six months, but with each visit we saw how Cassandra was getting stronger and better. She had good color, her appetite was improving and she was growing bigger, gaining weight and her heart rate improved. She never required any of the breathing equipment and never had to use those breathing tubes, she was a miracle baby. We would celebrate her one year birthday with another visit to the Childrenâ€™s Hospital and with more good news when the Doctor pronounced that Cassandra had made a 100% recovery from her surgery.
The Two Million Dollar Red Head
We had spent the last 18 months visiting 3 different hospitals, and enduring hundreds of tests, procedures and surgery. It seemed like the long dark nightmare was over, but there was one final area of crisis that we need a miracle in, the financial area. Each day the mailman would bring a new pile of Doctor and medical bills, and they would soon over flow the box we kept them in. Higher and higher they piled and soon one box became tow and then three. Our entire Dining Room table was covered with the piles of claim forms, approval letters, disapproval letters and bills, bills, bills. It was a full time job just sorting, submitting and then resubmitting the forms to the insurance provider and various programs that we were working with.
The nine months of visits, tests and procedures, surgery and then NICU recovery stay was more than $1,700,000, on top of the many of the previous tests from the other hospitals. Some of these tests
would cost more than ten thousand dollars each, and it seemed like our insurance was willing to paying less as less with each form submitted. By the end of June 2000, Cassandra was now 4 months old and we had incurred more than $2,100,000.00 in medical expenses over the fifteen months of the crisis. This total didn’t reflect the costs of weekly trips to the hospital and the various expenses that our family incurred. Insurances would eventually cover about 60-80% of the Doctor and hospital bills, but that still left more than $560,000 for us to pay. $560,000.00 is a lot of money no matter who you are, or how you care to look at it. Sleepless nights worried about Joanne and Cassandra’s health were now replaced by sleepless nights worried about financial ruin and bankruptcy due to the medical bills.
We tried very hard to keep up, contacting everyone who could and applying for any kind of assistance available, still before we could make much progress, the bills went to collection and our credit record was devastated. Calls were coming in by the dozens each day and night. Nobody wanted to hear that we were working on things, and everyone wanted money now. We were fortunate to have several attorneys providing us with great advice during the ordeal. Eventually though, we were forced to file for Bankruptcy once our savings, assets and retirement were depleted. This process is a humiliating ordeal that robbed us of any dignity we hope to retain. We never lived an extravagant lifestyle and had almost no debt prior to Cassandra’s illness. It was very painful for me, but it also revealed what was really most valuable to us, and that was Joanne and Cassandra. No amount of money could ever replace them, and bankruptcy was humiliating but paled in significance to have them in our lives.
Another miracle for us
Thank God for one of those volunteer attorneys who gave us so much of his time, and for a compassionate Judge who would not permit the collection agencies to destroy our lives any further. The court reviewed and then dismissed our bankruptcy petition, granting us as much times as would be necessary to make progress and payment arrangements on the medical bills. Once again, while I worried and panicked, God was busy working behind the scenes. Special programs from the hospital came to our rescue, and many of the doctors and technicians waived all or part of their fees and expenses. Our church and the children’s schools held more fund raisers for our family, and the owners
and fans of local minor league baseball team that I served as Chaplain, made a large donation. Even several of our former players who had made it big in the major leagues contributed to the expenses. Cassandra Roseâ€™s surgery was also featured on several nationally broadcast medical program, and they too contributed to the expenses. Within 18 months all of those bills were either eliminated, reduced or paid off, and every bit of the $560,000.00 was satisfied.
The Megahan Family
Now, we were a complete family, back to the joy and laughter that we once knew. Through the grace of God we have survived the worst nightmare than we could have possibly imagines. We were absolutely helpless and there seemed to be no hope. Yet God guided us through those dark times and performed miracle after miracle in our lives. We will never understand why we have to endure these trials, but we are so glad that we were never alone. God had raised friends, family, Doctors, nurses, a judge and several attorneys, all to support us in our time of crisis.
Soon, Cassandra Rose will celebrate her 13th birthday. Healthy, happy and strong. She cheerleads, plays field hockey and has never once experienced any further problems from the CCAM and the â€œsomething that I grew to despise. She is an example of Godâ€™s miracle working power!
Cassandra Rose and her big sister Ashley Victoria