Courtney’s Story

Hi! My name is Courtney Stevens. This is the story of my family and me.

I joined our family at 9:45AM on Labor Day, Sep 4, 1995 at Providence Memorial Hospital, El Paso, Texas. Shortly after I was born Gramma Sandy carried me to the nursery for routine examination and to allow my mother to get some rest. While I was being weighed, and having the number of my fingers and toes counted Gramma Sandy noticed that my legs were sort of bluish in color. Gramma asked the nurse why? The nurse said she wasn’t sure but went and immediately got help. I was transferred to Neonatal ICU and examined by several doctors. Dr. Jeffery Schuster, Pediatric Cardiologist, Texas Tech Health Sciences Center, was called in and did an echocardiogram. Dr. Schuster’s diagnosis revealed I had several birth defects, which were mostly heart defects. These defects are HLHS, DORV, d-Loop, d-MGA’s, ASD, VSD, Mesocardia, Pulmonary Atresia, Right Aortic Arch and situs inversus. I am totally situs inversus, except for my heart atriums.

Dr. Schuster called Dr. Stephen Leonard at Children’s Medical Center, Dallas, Texas, and made arrangements to transfer me to Children’s via their plane. Then Dr. Schuster met with my family to explain my birth defects to them. They were very upset and imagined the worst. There wasn’t a dry eye in the room. My Aunt Lori asked him if I needed a heart transplant. Dr. Schuster replied “No, we can fix her like she is.” Then he explained the Blalock, Glen and Fontan surgical procedures I would need to live. Mom and Dad agreed to transfer me to Children’s as soon as possible.

My family was then allowed to see me in ICU for the first time. They were surprised by all the monitors, IV’s, and breathing machines, connected to me. They had even re-opened my umbilical cord and were using all 3 of its vessels for IV’s and blood pressure monitors. I also had an IV in my right arm and left foot.

Children’s plane with their pediatric paramedics would take about 4 hours to make the 600-mile trip to El Paso. Because of limited seating on the plane, only one family member would be allowed to accompany me on the flight to Dallas. They decided that Gramma Sandy would go with me. Mom was released from the hospital less than 9 hours after giving birth to me, so she could fly to Dallas. Her doctor, however, did require that another family member accompany her. Grammpa Larry would accompany mom to Dallas on a commercial airline, along with my dad.

The airline schedule was such that they had to leave for Dallas 2-3 hours before me or wait until the next day. My mom was very reluctant to leave me, but wanted to be in Dallas with me during my surgery. They took the last flight to Dallas (8:45PM). Because it was a holiday the flight was full. The airlines, Southwest, had been notified of their situation, and offered other passenger’s money and the next flight out to give up their seats. When the other passengers heard why the seats were needed, many of them offered to give up their seats. They arrived in Dallas 4 hours before me. They would find out later that this was because the Children’s paramedics stabilized me to their satisfaction before they would transport me. I was experiencing some major problems and needed a kick start once in a while. I was taken by ambulance from the hospital to the airport in El Paso. To help relieve stress the ambulance driver even let Gramma Sandy operate the siren.

I arrived at Children’s at 2am, and was examined by Dr. Leonard and his team. Dr. Schuster’s diagnosis was confirmed and I was scheduled for surgery (Blalock Shunt) as soon my blood could be typed and a supply of blood was on hand in case it was needed. They also took a blood sample from my mom to determine some characteristics of my blood. I was taken into surgery at 5PM Sep 5^th. The Blalock procedure was performed through a small incision on my right side. Two hours later I was out of surgery and in ICU. When my family was allowed to be with me in ICU, I had even more tubes, hoses, IV’s and monitors, than before.

Me in ICU, 9/6/95 Me and mom, 9/6/95

My recovery went well for the next several hours. I was slowly weaned from the breathing machine and was eventually breathing on my own. Then I suddenly stopped breathing several times. Each time the ICU staff would gently shake or pinch me until I started to breathe again. My family was told this was because the morphine I was being given for pain was making me lazy and I would forget to breathe. Sometimes it would take more vigorous shaking or pinching to start me breathing again. However the last time I stopped breathing, shaking or pinching me did not work. Dr. Jean Takano, the ICU Pediatrician on duty, immediately administered a drug called Narcan. This drug immediately reverses the effects of narcotics like morphine and is used on drug users when they overdose. In just a few seconds I was breathing on my own and crying very hard. My family was very relieved to hear me cry. Children’s permits 2 family members to be in ICU with a patient 24 hours a day. By chance my family was changing shifts at this time and they all saw this happen. They were amazed at how quickly the ICU staff responded. Shortly after this my blood pressure dropped very low. The ICU staff again re-acted very quickly and gave me a large quantity of IV fluids. The rest of my recovery was uneventful and I was transferred out of ICU on Sep 8, to a room where my mom could stay with me and take care of me.
Through out this entire time my mom did not sleep in a bed. She would curl up in a chair in my ICU room and catnap. My family saw the mothers of several other children doing the same thing. They seemed to always be with their child. Watching my mom and the other mothers during this time showed my family how strong all mothers are. On Saturday they convinced mom to spend the night at the Ronald McDonald house and let Gramma Sandy stay with me. Mom was back with me in my room by six am.

Me and dad, 9/9/95 Me and big sister Ashley at home.

The Ronald McDonald house in Dallas was great. They gave my family the use of two rooms. Each night some organization would prepare a meal for the guests. At the Ronald McDonald house they met the parents and grandparents of several other children who were patients at Children’s and other hospitals in Dallas. They were amazed at how everyone supported each other in these troubling times. My family quickly learned that they weren’t the only ones with a sick child and that in some ways they were fortunate. From the time they were first told of my problems they knew that there was hope, and a light at the end of the tunnel. Many of the parents they met could not look forward to such a happy ending. This had a humbling effect on my family.

On Sunday Sep 10, they were told that I could go home Monday after tests were done to verify that my spleen and liver were functioning properly. Right after this mom and Grammpa Larry were talking to the parents of a boy who was born the day after me. He had several of the same heart defects as me plus several other major medical problems. They had met them before but hadn’t had much time to talk. The mother asked how I was doing. Mom told her that I might go home the next day. Mom asked how their son was doing. They replied that when they went back to his room the doctors were going to remove life support. This really hit home to my family. They wanted to rejoice about me possibly going home soon, but were too saddened by this couples bad news. A few hours later, my family saw them leaving the hospital in tears.

The results of the tests on Monday were good and I was discharged that afternoon and flew home. My recovery at home was excellent, however the rest of my family had more troubles ahead.

On Sep 28, Grammpa Larry had an annual ultra sound of his carotid arteries as a follow- up to surgery in 94. The ultra sound showed his left carotid artery was 98% blocked. He was admitted to the hospital and had surgery the next day.

That night Aunt Edie and Uncle Mark were on their way to visit Grammpa Larry in ICU when they were hit head on by a drunk driver. Aunt Edie was 8 ½ months pregnant at the time and wasn’t wearing her seat belt. She was thrown forward into the dash and windshield. She and Uncle Mark were taken by ambulance to a hospital for treatment. Thankfully, they were not seriously injured, and after spending several hours having shards of glass removed from Aunt Edie’s eyes, hair, scalp, and face they were discharged in the early morning hours of Sep 30. This just happened to be my mom’s birthday. We did not celebrate mom’s birthday until weeks later.

The next day, Oct 1, while still in the hospital, Grammpa Larry awoke at 4am with a heart attack. He had angioplasty and stenting and was discharged on Oct 4. On Oct 8, he had a second heart attack and spent another week in the hospital.

Aunt Edie gave birth to my cousin Kyle, on Oct 26. Kyle was born with a blood sugar problem and spent a week in ICU receiving treatment. This was another scary time for my family. After that, everything was quiet in my family until Jan.

On Jan 4, mom took me to my pediatrician, Dr. Alpard, because I was having trouble breathing. Dr. Alpard diagnosed me with RSV, a severe lower respiratory infection and admitted me to Sierra Medical Center PICU. The doctor on duty at Sierra told the ICU nurse to watch my oxygen saturation and to let him know if it fell below 70. He had not been informed that my oxygen saturation was normally 70 or even less. The nurse checked my sats and called the doctor immediately. My oxygen saturation was less than 40. The doctor was surprised and didn’t believe it until he checked himself. I was placed in a double oxygen tent and treated with some powerful medications that were administered as a vapor into the oxygen tents. Anyone who went into my room had to wear a respirator because the medication was toxic to adults. I was a sick little girl for several days, but after 6 days of treatment I was fully recovered and was discharged.

In March ‘96, I was taken back to Children’s for a heart cath, other tests and the Glen Shunt. Unfortunately I caught a cold and the surgery was canceled and rescheduled for April 30. We went back to Children’s on April 30, and Doctor Leonard did the Glen procedure. I zipped through recovery quickly and was discharged after 6 days and flown home. Two days later my left lung collapsed, apparently a common occurrence after open-heart surgery, and I spent another week in ICU in El Paso.

My family finally had several months without any more medical emergencies. Then on Jan 1, 97 four of my cousins, Kayla and Meagan, Aunt Edie’s other 2 children, and Brandi and Steffi, Uncle Roger’s children, were riding horses being led by their parents (2 on a horse). For some reason one of the horses spooked, pulled the reins from Uncle Roger’s hand, threw Brandi and Steffi off, and then took off running. Uncle Roger tried to catch them and was able to partially break their fall. This spooked the other horse, which pulled the reins from Aunt Edie’s hand and took off running with Kayla and Meagan hanging on for dear life. They were thrown off after the horse ran about 100 feet. An EMT who lives nearby saw what happened and rushed over to help. He examined the 4 girls and found that Brandi and Steffi seemed okay except for scrapes and bruises, but that Kayla and Meagan each may have broken a wrist. He recommended they be taken to the hospital for examination and treatment. Aunt Edie and Uncle Mark took their girls to the hospital where x-rays showed they only had sprains. They were both put in soft casts for 2 weeks.

A month later my cousin Kyle fell into a swimming pool while being baby-sat at a relative’s home. He was quickly pulled from the pool and 911 called. Kyle was taken by ambulance to the hospital. When Kyle was X-rayed he was diagnosed with a possible broken neck. Fortunately a CT scan showed his neck was not broken. Since Kyle may have swallowed some water he was admitted to the hospital and treated with antibiotic IV’s for 2 days to prevent any infection. He is fine now and is my favorite playmate. Sometimes it seems that Kyle knows about my problems. He is always helping me. He will even opens doors for me. Our friendship is a source of joy for my family.

I returned to Children’s on Oct 14, 97 for the Fontan. My family was told to expect me to be in ICU 1-2 weeks and in the hospital for 4-6 weeks. I amazed everyone and was out of ICU in 18 hours. The only problem I had during my recovery was my chest drains. They continued to drain longer than expected. Twice I was taken to the OR and put to sleep under general anesthesia for a procedure called chemical pluerodesis (probably spelled wrong). This procedure uses a fluid that causes the internal organs in my chest and my chest wall to fuse together to stop the drainage. I was also taken into a treatment room several times and given a local anesthesia while my chest drains were moved. My family tells me that I handled all this like a champ. Children’s has a policy that they do not draw blood, give shots, or administer any treatment in the child’s room. They want the patient to see their room as a safe place where nothing scary or painful will happen to them. Also, each time a child had any treatment or test they were given a small toy or a small stuffed animal. When I was discharged, I had 2 large plastic bags full of toys and stuffed animals.

Four days after surgery I was allowed to go to the toy room on my floor to play. At first I rode in a little red Radio Flyer wagon with wood side rails. After a few more days I was able to walk to the toy room. I would tell my mom, “Toy room Mommy” throw the drain tubes over my Shoulder and off we would go with mom carrying the pluero boxes that measured the output of my chest drains. Children’s also has a larger play area for patients on another floor. This area has more toys, games, and even several computers. All of these items and the cost of renovating this room were donated by Troy Aikman, the quarterback of the Dallas Cowboys.

I was in the hospital over Halloween and my mom dressed me up as a Witch. My older sister Ashley was in Dallas with me. My mom dressed her up as a Princess. Was my mom trying to tell me something? Not actually. The only costume mom could find that would slip over my head and chest drains was the Witch’s costume. Each department at Children’s had some activity, such as face painting or games planned for the patients and their siblings. Ashley and I had a great Halloween.

Me, Ashley and a nurse, Halloween 97 Me dressed as a witch for Halloween

You can see my chest tubes.

After 26 days, I was discharged and am doing great. I am now just over 4 years old. My height and weight are normal for a kid my age and I do everything a kid my age should do. I am learning to count and I am also learning the alphabet. The scars from my incisions are hardly noticeable and I am a normal 4-year-old in every almost every way.

We asked Dr. Leonard what the future would be like for me. He told us I could do what- ever I wanted, but I would probably never play basketball, volleyball or participate in track. But I should be able to do almost everything else. I will be able to have children if I want, and my life expectancy is at least 50 years and probably a lot more. My future is bright but yet to some degree uncertain.

At my latest six-month checkup Dr. Schuster said I am progressing as he expected. Dr. Schuster is slowly reducing some of my medications, Captopril and Furosemide, and hopes to eventually stop them altogether. However, I will be on Digoxin and Aspirin for the rest of my life. Dr. Schuster also said that since my heart rate is low he wouldn’t be surprised if I needed a pacemaker when I am about 12 years old. In Jan 2000 I had my yearly echocardiogram and also wore a Holter monitor for 24 hours to check my heart rhythm. All is still going great for me. We will update my story from time to time to let everyone know how I am doing.

We want to thank everyone involved with my treatment and the treatment of the rest of my family. The literally dozens of doctors, nurses, x-ray techs, respiratory techs and other staff at Children’s Medical Center, Providence Hospital, and Sierra Medical Center and William Beaumont Army Medical Center. They performed as professionals with love, care, and compassion. Even the cleaning lady at Children’s would come into my room every day and sing me a song. A very special thank you to Dr. Stephen Leonard and his team at Children’s Medical Center, Dallas, TX, to Dr. Jeffery Schuster, and his team at Texas Tech Health Sciences Center, El Paso, TX and to the staff of Providence Hospital, El Paso, TX. There are not enough words to express our appreciation.

Most of all we want to thank God for watching over us and giving us the strength to face the challenges of our lives.

Me and Ashley, Summer 99 Me and Ashley, after my Glen

Don’t I look healthy. and before my Fontan. You can

see my rosy cheeks from low Oxygen.

I want to thank all the members of my family for their love and affection these first 4 years of my life. They have always been there to help me and mom any time we needed them. Thank you Uncle Mark Villigan, Aunt Lori and Uncle Robert Wallace, Aunt Nanci and Uncle Roger Munson, and Gramma Amy Stevens. I love you all very much. A very special thank you to my dad Tony Stevens, Gramma Sandy and Grammpa “J” Johnston, Aunt Edie Villigan, Grammpa Larry Munson, and my extra special, super mom Lynn Munson.

Update:

It is now Jun 19, 2000 and I have had my yearly echo and Holter monitor. Everything is fine, as was expected. The technician that did the echo was so intrigued by my problems that she spent a lot of extra time looking at me. She had never seen so many genetic defects in one person before. I have also been seen Dr. Schuster. He is very pleased with my progress. For once, no one in my family is having any medical problems