The Right Heart for Travis
By: Dawn Martin

Travis Wayne Martin was born October 21, 1992 weighing eight pounds, five ounces with 8 and 9 APGAR scores. Having a history of spina bifida in the family, I was relieved to see this healthy little boy enter my world. Our first two months were heavenly. Being a mother was everything I had dreamed. We moved closer to family and set up our two month checkup. My biggest concern--the soreness in his legs after immunizations.

At the checkup I was surprised to see that his weight was only nine pounds, twelve ounces. He had been ten pounds at two weeks. Then I watched as the doctor listened to his heart; he was listening too long. When he finally faced my husband and me, he explained that Travis had a murmur. I feverishly explained that I too had a murmur as an infant. He quickly informed us that Travis' was not an innocent murmur.

The doctor was calm as he referred Travis to a cardiologist. My thoughts were that we were still dealing with something simple. Look at my baby; he is healthy! When the doctor returned with an appointment just a few hours away the reality that something was wrong started to hit me. We were meeting with the head of pediatric cardiology at a local children's hospital. Still, as I watched my beautiful little boy nursing and saw his smile, I could not believe that it was anything serious.

At the hospital Travis had his first echo, an ultrasound of the heart. As the technician and the cardiologist made comments to themselves, I became lightheaded, knowing that if everything was fine they would not have that many comments to make. Travis was oblivious to all that was happening, happily chugging away on a bottle--a distraction from what these strangers were doing to him. We were then taken to another room to wait. I sat holding my sweet baby. I told him that everything would be all right and that I loved him. A few minutes passed and suddenly the room was filled with doctors and nurses. Because we had been squeezed in, the head cardiologists gave us a brief explanation of what they had found.

Our son was in congestive heart failure, due to a congenital heart defect, an unbalanced atrioventricular septal defect with a small left ventricle (it would be months before we learned the term hypoplastic left heart). My immediate thought as they shared this news was to run from the room with my baby in my arms; they were not taking my baby away. Instead, I sat and rocked him with tears streaming and asked the doctor what we would do to fix this defect. He looked at me and replied, "It's not fixable." At that moment my world crumbled. My baby who had been "perfectly healthy" just hours before was now dying in my arms, and there was nothing they could do.

The next few days were a whirlwind. The first big hurdle was a heart catheterization so the doctors could be certain about Travis' heart defects. Travis came through this fine. He was started on digoxin to help his heart function more efficiently and Lasix to pull fluid off his body. Unfortunately, the digoxin reached a toxic level in Travis' body causing severe vomiting. I could not understand why my little boy, who seemed fine before, was now in the hospital acting and looking sick. It was difficult for me to trust the doctors. I was often defensive and angry when dealing with them. In my mind they were hurting my baby.

The results of the catheterization showed no surprises; we still had no hope. Christmas was in two days, and we just wanted our baby home, still not fully understanding what we were facing. After the catheterization I had a dream of jars with photographs on them and pictures of people needing transplants. I sat up and told my husband, "They are going to want to do a transplant." Finally, on Christmas day we were discharged with a follow-up appointment in four days. At this appointment we would be scheduling a surgery called a pulmonary artery banding which would relieve the pressure in Travis' pulmonary artery. The doctors had finally shared with us that transplant may be an option. We went home praying to stay for a while.

On December 29, after just three days at home, Travis had his next appointment. Because he still had not gained any weight, he was readmitted. At this point Travis started nasogastric tube feedings (food is put directly into the stomach through a tube in the nose). His surgery was scheduled for six days later. At this point I was panicked that we were reaching the end, so I called our pastor who baptized Travis in the hospital chapel.

While waiting for the surgery date to come, there was more talk of transplant. We would soon meet with the doctors and social workers to determine if Travis was a good candidate for transplant. The surgery was a stopgap measure to buy him time to grow and get stronger before a transplant was inevitable.

A fever caused a cancellation of the original surgery date, so it was postponed two days. Almost immediately after the surgery, we were told that it did not work. The only hope was that somehow he would grow into the PA band. This put more pressure on everyone to make a decision about transplantation. My husband and I were concerned about quality of life. If we took this heroic measure to save his life, would it be a life worth living? At this point we met our first transplant child and mom, finally giving me some hope. To see this seven-year-old boy running down the halls of the hospital and listen to his mother talk about him going to school made all the difference for me. At this point I knew that Travis must have a transplant.

The funny thing about a transplant is that the timing has to be just right. We were told that Travis was not yet sick enough to be listed. We spent the next month in the hospital trying different medicines to see if we could postpone the need. As each new medicine failed to provide any relief for his failing heart, I became more despondent. Things that should have helped were not. Would they list him quickly enough? Would they be able to save my baby?

On February 3, 1993, Travis was listed for a heart. This day was almost a relief. Finally we knew what to expect. Now it was time to pray the hardest prayer of my life, that some family would bestow the gift of life to my son. I hurt already for the family that would have to make such a decision. Could I make the same decision if it were mine to make? Finally, I began to pray for God's will. I was praying for a miracle.

On February 8th, one of Travis' doctors informed me that a heart may be available. It was a shock that it might happen so quickly; we had been told that six to seven weeks was an average wait (even though they said there was really no way to determine averages). Within a few hours we found out that we would have to wait a little longer--the heart was not suitable for Travis. I was disappointed but not crushed. I had been warned that this might happen. We would just wait for the right heart for Travis.

Over the next month and a half, Travis' weak body faced many challenges. He seemed to run a fever continuously and was admitted to the Pediatric Intensive Care Unit (PICU) more than once. We spent five days at home from January to March. The hospital became our home. On one occasion in the Pediatric Intermediate Intensive Care, we almost lost Travis.

With a rising fever and more difficulty with his breathing, he was transferred back to PICU, but during the move his kidneys failed, and his blood pressure bottomed out. It took nearly two hours for the doctors to stabilize him, and then we just had to wait. We were told the next eight to twelve hours were critical. Our biggest fear--that we would lose Travis before a heart became available--was quickly becoming a reality. I refused to give up hope. Travis was a fighter; he had proven that already!

Travis recovered and by March 25th was back in the intermediate intensive care, and we were looking forward to having him back in a private room. Just a few days before, one of Travis' doctors informed us that he was in "perfect" condition to receive a transplant. On March 27, 1993, my husband and I were on a date. Grandpa had taken to spending Saturday nights with his favorite guy, so Mom and Dad could have a little time to hang on to each other. We were at the circus, when a quiet, suspenseful moment came. We both heard the pager go off, the pager that told us a heart was available.

I have never run so fast in my life! We made it to the hospital in record time. I scooped my baby into my arms, somehow knowing that he would now be all right. His surgery lasted about eight hours. It seemed like an eternity. Early that Sunday morning, we got a glimpse of our pink, bloated, beautiful baby boy. He had an incredible recovery. He was off the respirator in just over twenty-four hours following the transplant. Within forty-eight hours he moved from cardiac recovery to pediatric intensive care, and nine days later he was in his own room. The biggest hurdles we faced were feeding issues and weaning Travis from his pain medications. Because Travis had been tube fed for so long, he had forgotten how to suck. With effort and patience he relearned what a joy it was to drink. On April 15th we got to take our baby home for good!

Learning to give Travis his medicines and record all of the information the doctors wanted was frightening and stressful. Doctors visits were frequent, two to three times a week at first, gradually slowing to once a week, then every two weeks over the next six months. Now, almost six years later, Travis visits his cardiologist once every six months. He has blood work every two months--a great excuse to visit McDonalds for breakfast and hit the playground! He is on two medications, cyclosporine and immuran, which he takes with his fluoride and Flintstone vitamin just like his brother.

Travis takes Tae Kwon Do (a martial art). He competed in the National Tae Kwon Do tournament this summer. He also began playing T-ball at the age of four and will soon be starting his third season. Last season he hit at least one home run a game! Travis is now in kindergarten and loves learning to read and playing with his friends. It is hard to believe that we really had to fight so hard to save him, as he streaks through the house and demonstrates new kicks.

The first few years post-transplant were more tenuous with frequent doctors' appointments and caution concerning his immunosuppressed state. At this point I can say he is just as normal, on a day to day basis, as the next kid. We know that his future is uncertain (transplantation of infants is only about thirteen years old), but at this point I can smile and look ahead when he tells me of the ten children he is going to have someday. I will be the luckiest and busiest Grandma around!

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  Compassionate Care

Letting Go
By: Kari Barr

"What is it?" I asked.

"It's a boy!" exclaimed my husband, Brad.

His name was Matthew Charles Barr, named after Matt King, our best friend who died in 1996. He was born July 1, 1997 and weighed six pounds, five ounces. We knew it was a boy, just like we knew our daughter, almost six years earlier, was a girl. We did not even have a girl's name picked out. The ultrasound did not reveal the baby’s gender because the baby would not turn over to show us. When I was about five months pregnant, I tested high for spina bifida. The baby revealed his spine, and the doctor said it was just fine. He tried to get the baby to turn over to check out his organs, but the baby would not cooperate.

About an hour after Matthew was born, a nurse noticed Matthew's respiration was high. They took him to the nursery. They brought him back to me about 11:00 p.m. to nurse him, but he would not wake up. I was getting magnesium because I had pre-eclampsia, so I could not keep him in the room with me. They brought him back again in the night, but Matthew still was not interested in eating.

About 10:30 the next morning, a nurse noticed Matthew looked bluish. She took him back to the nursery. About 1:30 p.m., while my parents were visiting, a neonatologist said Matthew was in the "transitional nursery" because he might have aspirated some fluid. After Brad returned to the hospital after work, I was told Matthew was in the Special Care nursery (ICU). The doctors still thought he had lung problems. We were not too worried; the doctors did not seem to be. My best friend had a baby with lung problems, and her baby turned out fine. I just thought Matthew’s condition was similar.

About midnight two days later, the neonatologist came in and told us Matthew was not responding to any lung medication, so they were going to test his heart. He took us to see Matthew explaining various heart problems and told us the worst case was HLHS, but he did not really think that was the problem. We went back to my room, but by now we were getting nervous. Never before had we experienced any serious health problems with our family. We called our Episcopal priest. He asked if we wanted him to come to the hospital, and we declined but requested he pray for Matthew. About thirty minutes later, he showed up anyway.

The neonatologist told us that Matthew’s tests indicated heart problems. They were going to transport him to St. Francis Children's Hospital. We were at Hillcrest which did not have the capability to take care of Matthew's problem. Brad was to follow the ambulance and await diagnosis, since I had not yet been released from the hospital. St. Francis was only about twenty minutes away.

The nurses brought Matthew in my room on his way to the ambulance. They opened the circular doorway in his enclosed crib and let us touch him. Brad and our priest, Father Don, followed them to the other hospital. I could not sleep, so I took a shower. My OB doctor called me because the hospital nurse had notified her about Matthew’s condition. She told me that I could go ahead and leave the hospital whenever I needed to. About 2:30 a.m. Brad and Father Don returned from St. Francis.

Brad said he talked on the phone to the cardiologist who diagnosed Matthew with HLHS. At 9:30 a.m the Hillcrest neonatologist explained the very serious and fatal nature of HLHS. He said there were a series of surgeries to treat HLHS; however, they were relatively new procedures and very hard on the baby. He told us the cardiologist would explain further at our meeting.

I was numb--in shock. I couldn’t cry. I couldn’t scream. I just laid in the hospital bed and kept thinking that it was all a bad dream and I would wake up from it and my baby would be fine. "How can anything be wrong with Matthew?" I asked. "He looks so perfect. He's beautiful!"

Amidst the turmoil I felt that night, I also felt an inner strength that I had never experienced before. I believe in God. But I had never really "felt" Him before. He was with me and my family that night and for the next week. I felt His presence.

At 9:30 my parents, Brad's parents, Brad and I met with Dr. Jackson, the cardiologist. He explained what a normal heart does and compared that with an HLHS heart. He gave us the three options and explained the Norwood surgery in great detail. He told us Matthew had the worst of the worst case of HLHS. Matthew's heart had no mitral valve, and the left side of his heart was virtually not there. Taking us into his office, he showed us the ultrasound of Matthew’s heart and told us the surgeries had varied percentages of success. He thought Matthew had approximately a 10% chance of surviving the surgeries but could not tell us what the quality of life would be for our son. Dr. Jackson told us to think about what he said, and he would come back later to answer any questions.

Our family and friends filled the hallways. The parents and grandparents were the only ones allowed in the ICU, and only two people could go in at a time. Brad and I asked Father Don if he would baptize Matthew. That morning, with the nurses’ permission, about twenty people gathered around Matthew's crib in the ICU. Everyone cried--even Father Don.

That afternoon, Dr. Jackson came back. We gathered in a family waiting room. He and two other nurses answered our questions. I could think of none. My parents, in-laws and Brad asked all the questions. I laid on the couch and listened, praying for an answer. After about an hour and a half, Dr. Jackson told us to go home and get some rest. Matthew was stable at the time, and we could go home and come back the next day. We had had very little sleep in the last fifty hours. We could not make any decisions yet. Brad and I drove home alone, while Lindsey, our five-year-old daughter, went home with her aunt.

When we got home, we tried to go to sleep. I was exhausted but felt so alone and scared. I finally broke down and cried. I asked Brad, "How can this be happening to us? How can we make a decision like this?" We finally went to sleep. I slept until about midnight. Brad had gotten up earlier. I went into the living room and sat down beside him. We held each other for a while. We talked about what we were going to do. I told Brad I felt God was telling me what decision to make; he told me he felt it too. We talked about that decision.

The next morning was the 4th of July. We went to the hospital and Dr. Jackson was there. He asked us if we had made any decisions yet. We told him we had and that we could not put Matthew through any surgeries. We were going to let him go. We asked him if he would keep Matthew on the prostaglandin until the next day so we could "celebrate" Independence Day with our daughter.

Later that morning, when our family got to the hospital, we gathered them together and told them what we had decided. Everyone cried. Both sets of our parents said they supported us completely. Father Don agreed with us but said he was still praying for a miracle.

Saturday morning, July 5th when we arrived at the hospital, they removed the prostaglandin medication and took out the respirator. They let us use a family waiting room to allow family and friends to hold Matthew. Later that afternoon the neonatologist suggested taking Matthew home. We quickly told her no. Brad and I were scared to take him home.

Saturday evening, Brad and I finally had Matthew to ourselves. The hospital said we could stay the night in the room if we wanted. Brad laid down and took a nap about 7:00. I had Matthew all to myself for two hours. I sat in the rocking chair and rocked him the entire time. I fed him, sang to him, kissed him and stroked his beautiful red hair. About 11:00 p.m. my parents called saying Lindsey was crying for us. We left the hospital about 1:00 and went home to our daughter.

Monday morning a nurse, the wife of a co-worker of mine, suggested taking Matthew home for the day with a hospital pass. She said we could do that, and later have Matthew released from the hospital if we felt we could. We decided try. We were going to have Matthew home! The nurse wrapped him up as tightly and put him in his car seat. On the way home, I sat in the back with him, unable to take my eyes off him. The only part showing was his head. I rubbed his beautiful face all the way home.

When we got home, I showed him around. I took him in his bedroom, and he looked around. We put him in his bassinet for only a moment and took turns holding him the rest of the time. Family and friends filled our house. We had to have Matthew back by midnight, so we took him back but decided to bring him home for good. The next morning we had him released from the hospital. Matthew's nurse made an appointment at Moto Photo to have our family portrait taken on the way home. Moto Photo told us we could have all the pictures we wanted at no cost!

We had Matthew at home for only one night. He died at 9:05 a.m. Wednesday, July 9th. Matthew, propped up on pillows beside us on the couch, opened his eyes and looked at us. My mother said, "He's not breathing like he was!" She picked him up, and we stood up from the couch. Matthew let out a sigh. That was his last breath. He looked so peaceful. We called hospice and Father Don. Brad, my mother and I took turns holding Matthew and kissing him. We kept him at our house for a couple of hours, and then the hospice nurse took him to the funeral home.

Matthew touched so many peoples' lives in his short week on earth. I believe he was a gift from God to everyone that knew him. He changed the lives of my entire family, especially mine. Whenever I see a beautiful sunrise or sunset, I think of my beautiful baby in Heaven. I cherish my life more and thank God for my beautiful children. My son will be in my heart forever. Wherever I go, whatever I do, he will always be with me.

Brad and I have attended support group meetings for infant loss and have had a couple of counseling sessions with a professional counselor. I think it is very important to get outside help with such a loss. Even though at the time we were so sure of our decision, I struggle with making peace with myself. I miss Matthew so much that it feels as if my heart has been torn apart and will never heal. But not knowing what the future held for Matthew, and the odds being against him, we could not have put him through the surgeries.

I now gather any information I find on HLHS and give it to our local hospital. I want the hospital to have information on hand to give to parents of babies with HLHS in the future so that their decision can be made easier. When parents are faced with the life and death of their child, they are in shock. They are faced with the making the biggest, hardest decision of their lives. I want to be able to make that easier for others by providing them with as much information as possible.

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  The Norwood Procedure

A Born Fighter
By: Cindy Tishka

Anne Marie came into this world on October 6, 1996 at 4:31 p.m., our beautiful baby girl. After several miscarriages and a rocky pregnancy of pre-term labor starting at nineteen weeks, we were both excited and relieved. Within the hour she was met and held by her three older siblings, who were fighting over who would get to hold her first and who had held her the longest. A nurse's aide took our first family portrait.

That evening we talked to her, held her, and I got a chance to nurse her. It all felt so right. We could not have been any happier at that moment. Little did we know how quickly that would change.

At 10:30 p.m. my nurse came in and asked me if I wanted to keep the baby or send her to the nursery for the night. I wanted to keep her with me, but being a nurse myself, I know that the first twelve to twenty-four hours after birth babies can be "spitty" or "gaggy," and I was afraid I would not hear her if I fell asleep. So I sent her back where I knew she would be watched. I told the nurse to bring Anne Marie in for feedings. My night nurse came in around midnight and told me that she had noticed the baby was breathing a little fast, so she took her to special care. A neonatologist was there checking another baby, and he looked at Anne Marie. He said she seemed fine but that they should monitor her for a couple of hours. She took me to the nursery to see Anne Marie.

She was sleeping and was on a heart and respiratory monitor. I remember looking at her SATs which were in the upper 80s. The nurse told me she would bring Anne Marie to me for her next feeding. As I walked back to my room, I prayed for God to watch over her. At that point I did not believe anything was wrong, but I could not sleep. I just laid there waiting for them to come back.

At 3:30 a.m. the doctor and the nurse from the nursery came in to tell me that Anne Marie had another episode of rapid breathing. They did a chest X-ray and said she had aspiration pneumonia. They would start her on antibiotics, and she would be in the hospital for seven days. They asked a lot of questions about the pregnancy, labor and delivery. They thought I had had an infection and passed it on to her. I told them I had not, and there was nothing remarkable about the labor or delivery.

Once again I went over to special care. They had her on an open unit and were getting ready to put in an umbilical line for giving antibiotics. I gave consent and stayed a few minutes until they made me leave.

I went back to my room but once again could not sleep. I was so scared. It was not supposed to be this way. I wanted my baby with me, not in the special care unit. I wanted to call my husband but was afraid of upsetting the whole house.

My nurse came in around 6:30. She told me I could go back to the nursery after the day shift came on, and the nurses finished giving report. She then mentioned that the doctor had heard a heart murmur, and Anne Marie would probably have an echocardiogram. No one had ever mentioned a murmur before. I really did not give it a second thought. My son and my husband both had murmurs, but they were insignificant. My husband was stopping by on his way to work, so I stayed in my room to wait for him. I did not want him to be worried if I was not there. He came in a little after 8:00. As soon as I saw him, I burst into tears and told him there was something wrong with our baby.

We walked down to the nursery, but we could not see her. A cardiologist was doing the echocardiogram, and we had to wait. Now I was scared. I knew there was something wrong. I started to think that something worse than aspiration pneumonia might be wrong with Anne Marie. Now there was a cardiologist involved. A different neonatologist came out and told us there was something seriously wrong with our baby’s heart and the doctor would be out in awhile to talk to us.

At this point I lost it completely. I could not believe it. After all we had been through, my baby could be taken from me. I was in shock, numb. This was not happening.

After what seemed like an eternity the doctor came out. We went into a room, and he told us our baby had a very serious heart defect called hypoplastic left heart syndrome. He went into great detail explaining the defect. To be honest, I only half listened. All I wanted to know was if my sweet baby girl was going to be alright. He told us we had three options. He named transplant first. He told us the pros and cons with the biggest con being we would have to wait for a match foran unknown amount of time. In the meantime her condition could deteriorate. Of course Anne Marie would be at the hospital while she was waiting for her heart. He told us that the infant mortality rate had improved due to medical technology however, there was a risk of rejection, and she would be on a lot of medication which he felt would diminish her quality of life. Also, he could not guarantee how long a heart would last. She might need another transplant at a later time. On the up side, with a transplant we would have a whole working heart.

The second option was a series of three surgeries. The Norwood procedure would be done later that week if we chose that option. The Glenn would be done around six months of age, and the Fontan would be done at eighteen to twenty months of age. He explained each of the surgeries and what they accomplished. The surgeries do not cure the problem but help to manage it. He told us the risks involved with the surgery and that not all children survive it. He told us that the children who have had the surgery are thriving. The third option was Compassionate Care, which he felt ethically should not be an option because HLHS children can be saved and are living quality lives.

I will never forget what he told us then. He said Anne Marie was stable, and she was a fighter! She was downright mad that everyone was poking and prodding her. He said, “Anne Marie doesn’t know she has a heart defect, and we’re not going to tell her!” We have found out during the past year that he often uses levity to lighten a serious or difficult situation to help keep things in perspective. He said she was in the next room fighting and then waited for our answer.

For us, compassionate care was not even a choice. Letting her go without giving her a chance was something we could not do. When it was all said and done, no matter what the outcome, we would know in our hearts that we gave her every chance to survive. She was a living, breathing human being. We did not have the power to take her life away without a fight. She was our child. If Anne Marie, less than twenty-four hours old, was in there fighting, we could find the courage to fight, too.

At this point my husband and I did not even discuss it. I felt like we needed to make this decision right away. I looked at him and asked him what he thought we should do. We have been together so long it is as if we are one mind; we decided to do the surgery.

The doctor said Anne Marie would be transferred to Christ Hospital because the surgeon there was one of the best. The baby would be put on prostaglandin to keep the ductus open, and surgery would be later that week. It seemed as if we decided in a matter of minutes. We had no knowledge of HLHS, had never even seen this doctor before, did not even know that Christ Hospital was a major heart center for children, and yet we took what he said at face value.

Anne Marie had the Norwood October 11, 1996, the Glenn March 24, 1997 and the Fontan August 27, 1998. She came through all of her surgeries very well. I have had time to think about my decision over the past months. Would I have picked a different route? No, I am happy with how things are going. This was right for us. I have no regrets, and I thank God each day for my beautiful little girl.