My Miracle Child
I’m sorry to inform you, Mrs. Ward, but with all this bleeding I’m sure you’ve lost the baby. Go on home and rest. You can try again in a few months. The year was 1977.
As a young mother of two very lively little blond boys this announcement carried a mixture of responses. My husband, a truck driver was worried about money, or lack of it I should say. He had been less than thrilled when I mentioned I could be expecting another baby. He was under a lot of financial stress. I had been using the latest birth control cream at the time, as I couldn’t go back on the pill. I was indeed surprised to find myself expecting.
Once I had returned home the bleeding stopped. In fact I never bled another drop. God had a plan of his own, in fact a miracle. The following month I returned to the doctor. He was indeed shocked to discover that I was still pregnant.
The pregnancy was a difficult one. I was told to stay off of my feet for the next two months. This proved to be quite a challenge having two boys at home ages two and four.
My Mother and my Mother-in-law were a great help, and a few friends pitched in too. In time I was up and moving again. I did however carry this little one very low. Around the fifth month my doctor had me do a sonogram. Everything looked good. It was another boy.
Then with a month left before my due date I began to have what they called then, seeping. I went to the doctor numerous times thinking my water had broke. I was sent home each time saying that was not the case but was just seeping. Three weeks before the due date my water indeed did break, but I thought it was just the seeping. I began to have labor pains three days later. By that time both the baby and I were sick. He was born with an infection all through his body. Even though he came three weeks early he was not considered premature. He weighed 7 pounds, and was fully developed. He did however spend his first month in the hospital fighting the infection.
It was three days before I saw my little guy. I had been moved to another floor to fight my infection. I was released three days later. I then drove to the hospital twice a day to nurse him. Again, many people stepped in to help. Our church friends were praying for us also. Our little one, Phillip Christopher Ward, received six shots a day in his little thigh. His poor little thigh looked like a little pin cushion.
Every evening his father drove to the hospital to hold little Phil. The nurses enjoyed seeing him come and interact with Phil. It was a special time for them.
My husband as a truck driver, was gone a lot. He worked hard to support his little family. His wife, me, Nancy, his two sons Dennis Anthony, who we called Tony and Jason Thomas. We rented a house from my parents, Pastor Bill and Billie Herzog, in Concord California. Nothing was more important to my husband than his family.
My husband’s parents, Erwin and Josephine Ward had just moved to the state of Washington. At one time we had all attended First Baptist Church of Walnut Creek. They and so many others helped us in so many different ways. There was much prayer going up for our little family.
Two weeks later Phil was allowed to come home even though some tests were pending. We had him at home for three days. His brothers had little masks that they would wear when holding him. His older brother, Tony, formed a special bond with Phil. He dearly loved him.
Then we received a phone call from the doctor. Phil would have to come back to the hospital as his tests showed he still had some infection. It was a very difficult thing to do. We all shed tears. His oldest brother seemed to feel so sad. Driving back to the hospital just took so much out of us.
Finally two weeks latter Phil was home to stay. He was such a good baby, so undemanding and sweet. He enjoyed watching his two older brothers. He did however develop quite slowly. We didn’t really think much about it. He walked at 13 months, but fell so much. He never seemed to be able to get his hands down fast enough to break his falls. He was constantly falling asleep in his highchair at dinner time. We just took it all in stride. His checkups were fine when he was routinely seen by his doctor.
Two years later Phil met his best friend and brother, Dustin. Yes, we had four little toe headed boys. They were all so adorable and much loved. Their church family loved them too. They even sang together in church. Such a joy they were to others.
Around the age of five Phil began to see his need for Jesus. He wanted Jesus in his heart and life. He wanted Jesus to lead him and be with him all the days of his life. He asked Jesus to come into his heart, forgive him for his sins, and reserve a place for him in heaven with Jesus when he died. His faith was very real and strong.
At age eight we signed Phil and Dustin up for soccer. This is when we really began to notice something wasn’t quite right with Phil’s health. During a practice time the coach had the team doing a drill that had the players running backward. Phil simply could not do the drill. We thought it was strange as the other boys did it with ease. It was wonderful to see his progress while on the team though. He actually won the award for the “Most Improved” player. He was so proud, and so were we.
That year the whole family traveled to Salem Oregon for my Grandparents 50th anniversary. My mother had two brothers. Her youngest brother, Dale, had muscular dystrophy. He had died at age 53. Her oldest brother, Keith, was at this anniversary party. He notice how Phil stood, and how he walked. It reminded him of his brother Dale. He mentioned this to my mother. She mentioned it to me. It suddenly made sense. Phil had muscular dystrophy and we hadn’t realized it. Because muscular dystrophy is carried from the mother to the sons, my brother could have gotten it. For some reason it skipped him, skipping a generation. But, being the oldest daughter, I had carried the gene from my mother to my son, Phil. In fact, each of our four boys had a fifty fifty chance of having the gene. The other boys were tested, and did not have the gene.
Once the doctor had confirmed that Phil had muscular dystrophy my husband had a talk with Phil about this. He asked him how he felt about having muscular dystrophy and that his brothers didn’t. (We had told him that all four of them had a fifty fifty chance of having muscular dystrophy). He said that he felt he was the only one who could handle it.
He knew with faith in God, and Jesus by his side he would be ok. The only thing that bothered him was knowing that he could end up confined to a wheelchair somewhere down the road. That was one thing that he did not want. He felt very strongly about that.
Just before Thanksgiving when Phil was 12 he got sick. We thought he had a touch of the flu. He continued to be sick. We didn’t know what was wrong. Some days later our youngest son, Dustin, told me that Phil had told him his heart was beating really fast, and had Dustin get out of bed, come over, and put his hand on his chest to feel his heart racing. That really got my attention. We had just signed up with new insurance and didn’t even have a doctor yet, so we went back to the doctor that had seen him from birth.
I must explain here that we could clearly see God going ahead of this whole ordeal. My husbands place of employment decided that they could no longer carry insurance for the
drivers that pulled their trailers, but owned their own trucks. That left us without health insurance. In September I had just taken a new job, and signed up on their insurance. My husband probably would have gone without because we couldn’t afford it on our own. We were on a plan with Kaiser. If we would have been caught without insurance I’m sure we would have ended up in big debt.
His doctor listened to his heart that day. As he listened his face went pale. He knew there was something terribly wrong. He told us to go immediately to Kaiser in Walnut Creek to see a doctor. We made an appointment and began a journey with Dr. Levine. He had some tests done and then sent him immediately to Kaiser in Vallejo, Ca for a sonogram. The doctor showed us the screen while Phil was being tested. His heart was enlarged and was beating very slow. He was then given some powerful pills that would work to keep the heart beating. We went on home for the time being.
Later we were told that Phil might have to have a heart transplant somewhere down the road. We did not really take that in. It was such a far out thing to us.
Also there was the fact that if so he would have to make it onto the transplant list. That seemed unlikely because he had muscular dystrophy.
Phil was too weak to go to school, so a friend of the family, a teacher that attended our church, Marsh Gillivan, began to tutor him. He was able to keep up with his class work.
Not too long after, in January of the next year, 1992, I had a scare. I was driving him home after a teaching session when he suddenly went pale and limp. He slumped over in the seat. In a minute or so he came around and was ok. This scared me to death. I rushed home and called his doctor. He told me to pack a bag and head straight for Stanford University Hospital.
I remember that day as if it was yesterday. We drove home and called his Dad. We then told his brother, Jason, who was home at the time. I remember him punching the wall. He came out and hugged his brother good-bye really not knowing if he would ever see him again. We then drove to the high school. I walked into basketball practice and called his oldest brother, Tony, to come out. I told him about Phil, and he came out to the car to hug Phil and tell him he loved him. Next I drove to the elementary school to pick up his younger brother. We told him in the car as we drove over to my in-laws house. He was very upset and wanted to cry, but held it all in. We drove quickly over to “Grandpa Ward’s. Grandpa and Grandma Ward had moved back from Washington State and now lived in Walnut Creek. He drove us down to Palo Alto to the Stanford University Hospital. It was a long drive and we had never been there before. We were all so scared.
Finally we got Phil checked in and into a private room in the children’s ICU. He was assigned two nurses. Each one put in a twelve hour shift. His day nurse was Debbie and his night nurse was Julie. They were fantastic. It turned out that Debbie was a woman of faith. We began each morning with prayer. This gave Phil and I great comfort.
During that time Stanford was not set up for parents that wanted to stay at the hospital all night. We would have to sign up for a cot that would be set up in the playroom. All the parents that stayed would fall into a cot at night exhausted. We slept in our clothes. We were allowed to take a shower, but it was in a room down the hall. It was most inconvenient. After a few days a social worker came to see me. She provided some discount passes for the cafeteria.
Phil turned thirteen after just a couple of days there. He had wanted to go to Chuckie Cheese for his birthday. A friend of ours was able to borrow the Chuckie Cheese costume from a local Chuckie Cheese. We had a party for him right in his room. Our friend, Randy Young, then wore the costume around the children’s wing and gave all the kids a treat. It was really special.
After a few more days, and after Phil had gone through many tests it was determined that he just had 6 months to live at most. The only thing that would save him was a heart transplant. We did not think that he would pass the physical to be allowed onto the transplant list because of his muscular dystrophy. We had decided to take him home to die. We did not want to leave him in the hospital. He wanted to go home too. He did not want to stay there for 6 months. The night that he heard he had 6 months to live, I believe something happened between him and God. A vision, or a word to his spirit, something had happened. When I saw him the next morning, he was completely at peace. He was not afraid of dying or of any other thing he may be put through. He had no fear. His faith had become so strong.
Meanwhile his regular doctor, Dr. Peter Levine put together some research and presented it to the transplant board. There had been two successful transplants done on people that had muscular dystrophy. They were done overseas. There were none done here in the United States. It was another miracle that the Transplant Board added Phil’s name to the list. In fact, they moved him to the top of the list. Our prayers, and those of many others were answered. Now the waiting would begin.
Because Kaiser was paying for Phil’s treatment it was deemed that he would leave Stanford and be moved to a Kaiser facility in San Francisco to wait for a doner heart to become available. This was a very difficult time for all of us. I would have to drive from Concord to San Francisco every day. This was about an hours drive one way. This was terrifying to me. There was one parking garage, and if you didn’t get in it you would have to park on the street. The street was one of the steepest hills I’d ever seen, and I definitely wasn’t good at parallel parking. The routine was to drive over by 11:00, missing the morning commute traffic and leave by 4:00 just ahead of the afternoon commute traffic. Usually someone from our church would ride over with me. This really was a help to me. We would eat lunch in the cafeteria and play games with Phil in the afternoon.
My husband would come on the weekends. He would bring the boys over on Saturdays. Our son who was three years older than Phil once gave him a haircut right there in the hospital. They would always order pizza to be delivered. Phil really enjoyed his time with his brothers.
Originally Phil was in a curtained area in a large room with other children. He was finally moved to a private room. They wanted to keep him isolated so that they could keep him healthy enough to under go surgery when necessary. They began trying to put some weight on him also. He weighed only 85 pounds at that point. He was so weak he could barely get out of bed.
A day or so later Phil developed a very high fever, 107! This tied a hospital record at the time. They brought up an ice bath to put him in. His fever went back down before they had to put him in the ice bath.
The hospital had a wonderful recreational person on staff. She was wonderful with Phil and Phil really enjoyed her. She did a great job with all the children in the ICU. One day they even had dogs come in to visit with the children. Phil really got a pick-me-up from that.
Finally after seven and a half weeks a heart became available. We got the word, and then began to pack up Phil’s stuff for an ambulance ride back down to Stanford University Hospital. The whole staff of the intensive care came by to say goodbye and wish him well. I was allowed to ride in the ambulance with him. Meanwhile the heart was being flown up from the Fresno area. Sadly there are always serious accidents in the Fresno area with the thick fog rolling in each winter. We later learned that it was a twenty eight year old female who had lost her life.
As we gathered in the emergency area, the surgeon arrived. He was young and brash. He asked my husband where Phil’s chair was. Dennis was puzzled and asked what he was talking about. He said, you know, the wheelchair. Phil had never been in a wheel chair as his M.D. was a mild case. This set the tone for our interaction with his surgeon.
One of Phil’s original nurses happened to be at a party with doctors and nurses from Stanford and heard that a heart had come available for Phil and rushed over to the hospital. This meant so much to us.
Debbie, Phil’s nurse friend offered to go in with him to get him ready for the surgery. We were not allowed in. Another couple from our church was there along with some of the family. The husband offered to pray for Phil. Phil later told us that at that point he only had one question. Would he wake up in heaven, or wake up down here on earth. All of this took place at around 11:00 pm. As they wheeled him in Dennis and I found we had complete peace about the surgery, leaving it all in God’s hands.
At around 2:00am a nurse came out to tell us that things were going along fine. A few hours later the surgeon came out to talk to us. He was extremely excited that he had done the surgery in record time. Not exactly what parents want to hear. A couple of hours later they wheeled him over to his room. When we first saw him we were completely devastated. He looked so small, pale, and close to death. We were terrified of what was to come. He had tubes everywhere. By the first evening he was told to sit up and dangle his feet over the bed. I thought they were insane and inhumane. He did sit up clutching his chest and moaning. It was so painful just to watch. We had to be very careful about spreading any germs. We were to wash thoroughly and wear a mask while in his room.
The next day they had him out of bed and sitting in a chair. He looked so small and so weak. He only weighed 86 pounds at the time. Next came all the drugs he was to take. There were so many and some were extremely large, but the worst was the liquid cyclosporen. It smelled just like a skunk! He gagged and sometimes puked just about every time it was pill time. On the forth day he declared that he would rather die than to take these pills and drinks the rest of his life. He honestly didn’t think he could do it. I called my husband in a panic that day as Phil refused to take them.
Finally things began to get a bit better. He had physical therapy every day. He was beginning to get stronger. During that time he had to have a heart biopsy once a week. This is where a needle is treaded down through his neck and into his heart. A little piece is removed which could be tested to determine if his body was rejecting the new heart. During that time one of the biopsies turned out to show his body was rejecting the heart. They would give a treatment intravenously that would stop the body from rejecting the heart. This would give a person yellow vision. It was also known to make the person very irritable.
Phil had endured countless procedures and had maintained a kind and patient disposition. He had one and only one display of irritability. Phil was now 13 and very independent and bright. He had his pill regiment down pat. A young nurse came in and asked him if his parents had given him his pills. He looked at her and with a cranky voice said, “I didn’t have a brain transplant”! We all just roared with laughter.
His surgeon came to visit him one day. He had from the beginning given us the impression that he thought it was a waste to give a heart to someone with even a mild case of muscular dystrophy. Now, Phil had read everything he could get his hands on about transplants. He asked to see his bad heart, and asked if he could see a transplant take place. He knew all the terms and such. The surgeon began to tell him about a procedure that he was to have. He was telling him as though he were a four year old. Phil looked at him and said, “Oh, you mean a angioplasty”. He had studied up on all of these medical terms. His surgeon was quite impressed. He had begun to look at Phil in a new light. He began to see him as a life worth saving.
When things were somewhat stable, Phil moved into an apartment with me near the hospital. I was living there ever since the transplant. It was a nice two bedroom apartment with all the amenities. It was truly a blessing to have it available as I needed to be at the hospital everyday, and then he needed to be there to go to checkups each day for a while. After a few weeks he was able to go home for good.
I will never forget Easter Sunday that year. We returned to our home church that had been so supportive during the whole ordeal. When he was asked to stand he was given a standing ovation. It as very moving. He had survived something that few people ever will have to go through. There were many people around the world praying for him continually. He had received many cards and letters and some gifts too.
Most people would think that at this point the story should end with, “and he lived happily ever after”. It wasn’t quite that simple. First off there was the risk of his body rejecting his new heart. To stay on top of that issue he had to have regular heart biopsies.
This involved driving back to the hospital which was about an hour and 45 minutes away, having the procedure done, which was to thread a small line with a little pincher on the end through a needle stuck in his neck, down to the heart, taking out a piece of the heart to have it tested for rejection. He would do this without medication. Sometimes this line was threaded through a needle in the groin area. This would involve laying flat for six hours after the procedure to guard against bleeding. This was very difficult for him because with his muscular dystrophy he would have a hard time getting around after laying flat for six hours.
Also he had to take all of those pills everyday. This caused him a great deal of stomach pain. He was seen by a stomach specialist that ran every test in the book on him. These tests were very hard on Phil, fasting for some, drinking castor oil for others. The doctor was unable to find any real answers or help much with his stomach pain. The pain was attributed to the harsh medicines.
In spite of his physical challenges Phil had a servants heart. Every Thursday night he would make pizza for our family. He would then hand deliver the pizza to his brothers who were usually sitting out in the TV room. Later it became too difficult for him to make the crust, so I would do that part and then he would add all the toppings. His brothers rarely missed the Thursday night pizza. It made an impression on them as Phil showed his love for them by serving them.
About 10 years later it was discovered that Phil had lymphoma. This is a cancer, but it is treatable. He underwent five weeks of radiation. Often because transplant patients are imnosurpressed they end up with cancer. He would have to be checked often to make sure it didn’t return.
Phil’s muscular dystrophy began to get worse and worse. He had to give up driving, and singing on the praise team at his church. He spent a lot of time in bed. He never gave up though wanting to do something that counted for God. He had his church office e-mail him over the prayer list and he prayed daily for the needs of those in his church.
Thirteen years after his transplant Phil died one night while in the hospital having some anti rejection drugs given to him. The transplanted heart just gave out. He was tired of all the treatments and feeling like he was a guinea pig for every new transplant drug. He was ready to go. He knew he would wake up in heaven and was looking forward to it.
The day he died we received word from Kaiser that he had just been approved for a wheelchair. It was as if God said to him, “Because you were so faithful to me through it all, I’m going to spare you from the wheelchair. What a joy for him to be walking, no running up in heaven instead of confined to a wheelchair.
His life was such a blessing to so many people. He even went around to various schools and gave talks about his experiences and about his faith. He would always sing a song at the end of his talks. He had a dream of making a CD of the songs he loved. He was able to do that with the help of two wonderful friends, Kevin and Adam Toqe. Many people were so encouraged by his music.
We were able to have thirteen more wonderful years with him. Sometimes the journey was hard, but there were also a lot of happy times. We have so many great memories of the time we had with him. He truly blessed our lives.
