||Tiger Iron Press
Story of my son who received a heart transplant at one year old and he is now 19. It is about how our family survived and thrived despite living with a chronically ill child.
Heart transplants are high drama. They make national headlines and are subjects for TV shows. People are interested in reading about someone who has the odds stacked against them, especially if it is a twenty-three month old child. Our nation as a whole is interested in medical advances, particularly when children are involved. Nick’s New Heart is about that drama. It is the story of my youngest son’s heart transplant. Nick was born with a heart defect, had three open heart surgeries, and a heart transplant before the age of two.
In Nick’s New Heart I share how my husband and I had to plan for the eventuality of a funeral and how we struggled to explain Nick’s situation to our other three children. I tell what it was like to wait for a heart as well as what life was like after the transplant. Included is how our family lived as normally as possible even with a chronically ill child. Today, sixteen years later and despite the fact that the shadow of death is always over us, life is good. Nick is a normal, well adjusted teenager. (As normal as a teenager can be.) Our family found that life can be wonderful among the unknown and uncontrollable.
I wrote Nick’s New Heart because there was nothing in the book market when Nick was transplanted that was written from a personal experience point of view about a child having a heart transplant. I still remember desperately searching for anything to read on the subject. I know the frustration of not being able to locate a book that met my needs.
Nick was a pioneer in pediatric transplants. At the time he was transplanted only one hundred and fifty children under the age of eighteen had received heart transplants. The number under the age of two was even fewer. There was only a hand full of parents who had experienced what we were living through, therefore no established support group. I hope Nick’s New Heart gives other families a place to turn to in order to get first hand information from another family that has lived with a chronically ill child.
There was nothing unusual about my pregnancy except for my craving for chocolate-cream filled snack rolls. With no obvious medical reason for an ultrasound, I did not have one, especially since our insurance would not pay without a demonstrated need. During earlier pregnancies, I had painted the house, refinished floors, and even wallpapered, but I was not as active during this one.
My husband Andy and I arrived early at the hospital because my doctor decided to induce labor. He thought I needed to deliver before my due date because one of my other children had weighed eleven pounds, two ounces when he was born, and the doctor did not want this baby to be as large.
The nurses assigned to me asked me how many children I had. Each was surprised to find out I had three toddlers at home and more astonished to hear their ages. One nurse curled her upper lip in a sneer and said she thought I already had enough.
The lights were extra bright, reflecting off the white tile walls of the delivery room. My obstetrician and Andy stood at the foot of the delivery table. Andy was so excited that he grinned as if he were the one doing something wonderful. I smiled back at him, anticipating the joy of having another child. Then my doctor announced, “It’s a boy!”
Nicholas Samual May was born at 5:20 P.M. on April 5, 1989. He weighed eight pounds and eight ounces, a healthy size for a baby. He joined Drew, five; Mary Beth, three; and Zach, fifteen months. If Nick had been born three weeks earlier, we would have had four children under the age of four.
The delivery took twelve hours from start to finish. After the birth, I asked my doctor if Nick was okay. I noticed he was bluer than my other children had been when they were born. My doctor told me the baby had ten fingers and ten toes and looked good to him. His assistant put Nick on oxygen, but explained it was nothing to be concerned about - just routine.
Andy and I had met at Auburn University. He was tall and red-headed, contrasting sharply with my short stature and brunette hair. When we married, Andy wanted a big family, as did I. He worked in the carpet industry as a production manager, and after our first child was born, I became a full-time homemaker. We were a happy and busy family and enjoyed traveling, camping and football games.
In recovery, I asked the nurse, “Can you check on my baby?”
“He’s fine. You can see him later,” she said.
“I really wish you would check. My other child, just a year older, had to be in the Special Care Unit for low blood sugar, and I’m worried about this one.”
“Okay, I’ll see how he is.” She returned sometime later. “He’s fine and in the regular nursery.”
I was told that Andy, the children, my mother and both his parents had seen Nick. A nurse brought him out of the nursery so that his brothers and sister could touch him, and they had a big photo session with Nick.
From past experience, I knew I would not see Nick for the first few hours. After getting settled in my room, I asked for him, and the nurse said she would bring him to me around 7:00 P.M., but no one ever brought him. Asking again, a nurse told me that there might be a problem with his blood sugar, but I would probably get to see him around midnight. Although I was concerned, Zach had experienced the same problem and was fine, so I took it in stride.
I was still wondering why Nick had not been brought to me when the phone rang shortly after midnight. It was a nurse from the Special Care Unit. “I’m just calling to let you know we’ve transferred your baby to the Unit. We need to watch him a little more closely. He’s fine right now. We want him to stay that way.” I interpreted that to mean that they were being careful because they were aware of Zach’s problems at birth.
The next morning, right at 10 A.M., I called the Unit. “May I come see my baby?”
The nurse put me on hold. When she returned, she said, “Dr. Reed is here and would like for you to come to talk to him, if you feel up to it.”
“I’ll be there in just a few minutes. I need to walk some anyway.” I wondered what was going on, but I still was not too worried. Dr. Reed was our family pediatrician, and I was not surprised that he wanted to speak to me.
I walked slowly down the long hall. Reaching the Unit, I washed my hands and put on a gown. Dr. Reed was standing beside Nick’s isolate when I entered. His characteristic smile was missing this morning.
As usual he went straight to the point, “Susan, your baby has some type of problem. He’s receiving one hundred percent oxygen, but the oxygen isn’t getting to his feet or hands. This tells me that there may be something wrong with his heart.”
Oxygen level? Heart problem?
Dr. Reed continued, “I’m sending your baby to a hospital in Atlanta. I’ve already made arrangements. He will go by ambulance.”
What? I was stunned, shocked, in disbelief. I stared at him, saying nothing. I looked at Nick, the floor, the ceiling, anything to make this news not to be true. If I did not focus on Dr. Reed, maybe this would all go away. He had to be talking to someone else because my child could not be that sick.
“The ambulance should be here in the next hour or two.”
Angel II was the neonatal ambulance that works out of Grady Hospital in Atlanta. It is a highly specialized ambulance staffed by a driver, a nurse, and a respiratory therapist, that transports newborns from area hospitals to those that are more specialized.
Nick would be transferred to Egleston Children’s Hospital. Dr. Reed started a drug to keep the hole in the heart between the two upper chambers open. Everyone is born with this hole, and it closes anywhere from hours after birth to around three weeks later. Nick’s problem appeared when the hole began to seal.
I had no family with me as I looked at what appeared to be my perfectly-formed new baby, yet Dr. Reed was telling me something was terribly wrong. I calmly said, “Okay.”
When I left Dr. Reed, I was sure he thought I did not understand; he was right. My brain was skipping like stones on a lake. I had to call Andy.
In slow motion, as if in a shadowy mist, my body trembling all over, I walked back to my room. Fear consumed me, but still I did not know enough to know exactly what I feared. I would not let the possibility of Nick’s dying cross my mind. I forced death out of my thoughts the second it entered. I started praying - hard.
If I stood in the hall with my back to the wall, still, so still, so quiet, barely breathing, I started to believe that even though I was in plain sight, I could be invisible. I would disappear. If no one could see me, nothing bad could happen. The horrible truth could not find me. It was surreal, like seeing my life from a distance.
When I finally made it to my room, I called Andy. ”I’m on my way,” he said.
A Review of
Nick’s New Heart
The True Story of Love, Strength and Courage
Author: Susan May
Reviewed by Jim Gleason, heart recipient
Ok, this is another of those “I can’t put it down” books that grabs one’s heart and
ends up with tears and a single day of dedicated reading, and that combination
makes for a top rating in my book. In Nick’s New Heart, Nick’s mother, Susan May,
shares her compelling story of family life when her child is born with a three
chambered heart (instead of the normal four), a heart that will not support his life
for long. From the moment of birth the reader is taken along in a very close and
personal way on doctor visits and hospital stays, sharing in the home dynamics of
facing the impact such a focus has on the rest of the now six member family, feeling
the desperation and hope roller coaster ride as it develops over those first few
months and years. Baby Nick struggles and inspires both his family and medical
teams as they fight together for his life, described in detail for the first two years of
life medical issues and too many complex cardiac operations that include a life
saving heart transplant just weeks before his second birthday. For the next
developing years, as he moves through becoming a teenager eventually facing
college and career decisions, a dream come true for a mother who prayed to see this
day, there is less detail as Nick grows in less dramatic and often normal ways, under
the ever watchful eyes of a loving family.
Back in 1991, facing Nick’s failing heart news, Susan couldn’t find information on
others who had gone through similar challenges. A determined woman of action and
skilled writer, she took it upon herself to create a support resource with this book.
In the telling, Susan and Nick give hope to those many other families who have been
given equally poor prognosis yet fight against the odds every day, praying that they
too may someday be able to celebrate their own child’s young adult successes. This
success is summarized in a 2008 graduation photo of 19 year old Nick, dressed in
tux, looking so healthy and ready to take on the adult world, a triumph of human
spirit, family prayer, faith and dedication supported by evolving medical science.
Nick’s New Heart is excellent reading for medical professionals seeking to
understand what goes on in the family outside the doctor and hospital offices, giving
insight into the hearts, minds, hopes and fears of parents. Be forewarned that if you
are like me, there will be tears of joy, for example, as Dr. Kanter announces to an
anxious family the heart transplant operation success, and that’s just one of many
tear-filled reading moments. The author’s writing skills come through in connecting
to the reader’s heart like that, supported by family photos showing Nick’s growing
years, making it even more personal.
An important implied advice for patients comes through as we see Susan playing a
very strong proactive role with their medical team. The very special bond with his
primary doctor can be seen in the often humorous banter, adding spice to their
mutual challenge insuring Nick’s attention and care from one crisis to the next.
Nick’s story also gives testimony to the anonymous gift of a donor family who gave
Nick his heart when they couldn’t save their own child, thus recognizing both sides to
such life experiences. Finally, don’t miss Susan’s closing Reflections, in which she
shares her own heart even further, addressing thoughts on his dating, career, and
future life. There is also an Appendix, offering beneficial information and advice to
help families with chronically ill or transplanted children. With this writing, Susan
May has fulfilled her mission of providing that support resource she found sorely
lacking in facing their own challenge almost 20 years ago, hopefully making it easier
for those who follow with their own successes today. Susan, thank you for sharing
your life and dreams with us in this wonderful heart-filled story of motherly love and
Note: Nick’s New Heart is available in hard cover directly from the author or
Amazon.com. You can learn more from her website at http://nicksnewheart.com/
I love medical books, especially the ones written by laymen and those written for
laymen by doctors. So, when a chance came to review this book, I agreed readily
and I am happy that I agreed!
Susan writes well and the editors also did a wonderful job in keeping the flow
smooth. The story is gripping and the saying, "Truth is stranger than fiction" is so
true in this case. The problems with Nick (Nicholas) start early, almost
immediately after his birth and continue into the childhood, culminating in a heart
transplant surgery 17 years ago! The book is about the drama, the trauma and
the wonderful doctors and the support groups that helped the baby live and that
too with a fairly high quality of life!
There are a few typos but they won't distract you, the reader (I could not help
seeing them because I am a reviewer and editor myself). I was left wondering
why Susan did not write this book earlier when pediatric heart transplants were
not that common and when her book could have reached out and gave new hope
and courage to thousands of affected parents all over the world. Now, pediatric
heart surgeries including heart transplants are much more common and there is
a lot more information in the form of books, articles etc.
All in all, reading this book was moving and inspiring. I recommend the book
strongly if you or some one you know have any interest in health matters,
especially relating to children, surgeries etc.
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