A Mother’s Love
On November 11, 1996 I gave birth to my handsome son, Delmar Davis (DJ). After 12 hours of trying to be induced, the doctors grew concern that with each contraction, Delmar’s heart beat began to fade. The decision was made to perform a C-section at 11:00pm. Delmar was born at 11:11pm. When he was born I only heard one short cry and saw the nurses take away a blue baby. I began to panic and the doctors were able to put me to sleep before I got too carried away. I woke up the next morning with a doctor in my room waiting to talk to me. He informed me that my son was born with a heart condition called Tetralogy of Fallot. I did not understand what that meant so I asked, “Will he die?” I was told that he would need surgery between the ages of 3 and 6 months in order to survive.
I am ashamed to say that I was terrified to see him at this point. In my mind, he was going to die. I felt completely helpless. I actually refused to see my baby for that whole day. However, early the next morning, I decided that I needed to see my baby as soon as possible. When I got to his bedside, I knew instantly the challenge that I was about to be tasked with. He was beautiful and so small and needed me to be his voice. His complete trust and livelihood was now in my hands. I said a prayer to God, thanking him for his faith in me to take care of one of his little angels. I promised during that prayer to take care of him and put his needs above my own. And that is what I have done.
The hospital that DJ was born in had a Children’s hospital located nearby. Naturally, we were referred to that Pediatric Cardiac Care unit. I went to the first scheduled appointment and immediately knew that this was neither the doctor, nor the hospital for me and my son. There is absolutely no way that a doctor was going to referred to my child as “this baby”. He has a name and the right doctor is going to call him by name each and every time they had contact with him. I left that appointment knowing that I would not return. My search was now on for a Pediatric Cardiologist. I turned to the internet and Googled all of the local Pediatric hospitals. I set up appointments and met with two doctors before I found the right match. I call these appointments, “the interview.” For my next interview, I walked into St. Christopher’s Hospital for Children and met Dr. Russo. I purposely set up an appointment with the surgeon before even considering a Cardiologist. Dr. Russo began by getting to know us and DJ. He referred to DJ by name (or nickname) and listened to my concerns (and let me tell you . . I had a lot). Dr. Russo took the time to explain more about the heart than most people want to know.
Dr. Russo introduced me to one of the best Cardiologist I could ever hope for. He also recognized the passion I had to talk to other people and my aggressive stance in advocating for my child. He did not resist or try to change my approach. Instead, he formed a support group and asked me to join. The support group was made up of parents much like myself with the difference being the diagnosis of our child’s specific congenital heart disease. The one thing we all had in common besides having a child with heart disease was Dr. Russo. We were all thankful to Dr. Russo and willing to devote our time to reach out to his other parents. We took pride in helping others while also being able to draw on the strength of each other get us through difficult times. Although we all know people who are ready to sympathize for us, we all needed people who could empathize with us. No one wants sympathy. In additional to talking to parents, we also put out an educational newsletter called “Heart of a Child.” I actually became the co-editor of the newsletter.
Due to a variety of reasons, which I may write about at some other time, DJ did not have his heart surgery until he was 10 months old. He completely missed the recommended 3 to 6 month window. By the time DJ had surgery, he had experienced “tet spells” and various bouts of pneumonia. He stayed in the hospital more time than he stayed home. Dr. Russo was tasked with finding a common ground between two parents with different religious beliefs. I can tell you that I thought my beliefs made more sense but that is a biased way of looking at it. I can definitely tell you that my religious beliefs did not hinder DJ’s care in any way. Dr. Russo had to listen to my demands while respecting my husband’s beliefs. I did not understand it then because of course I thought my views were the right views. But in hindsight, Dr. Russo’s ability to bring two parents together for the good of the child saved us from fighting over this issue for the rest of our lives. Dr. Russo was open and flexible to treatments plans and introduced us to a variety of scenarios.
Although I was anxious for DJ to have this life saving surgery, nothing in the world could have prepared me for surgery day. My husband and I were joined by our immediate family while DJ was in surgery. Everyone was struggling with what to say to each other. As a mother, I was more comfortable with knowing that I had family with me but the conversation was unnecessary. The only thing I wanted to hear was the nurse who came out frequently to give us updates on DJ’s condition. At one point I had a terrible feeling that something was not right in the OR. I began searching for the nurse and asked her to check for me. When she returned she advised us that DJ had an asthma attack during the surgery which was handled by the quick thinking actions of both Dr. Russo and Dr. Davis, the anesthesiologist. At that point, the only thing I longed for was to see my son. And again, nothing could have prepared me for that first look. When DJ was being wheeled into the Cardiac Care unit, I saw him lying on that bed. I saw a very swollen looking baby with tube running from every part of his body. He was intubated and naked. I fell to my knees completely distraught. When I was allowed in to see DJ, I was told that he was in a medically induced coma to help him through the night. I was told that I could not stay with him because the doctors and nurses would need to keep the bedside free so they could get to him immediately if necessary. I flat out refused to leave. I was willing to stand in the corner if I had to but I was not leaving and NO doctor was going to make me. While standing my ground and feeling more desperate than I ever felt in life, I looked over at DJ and for a brief moment I saw an angel sitting on the pillow above his head. I know that sounds crazy. But I really did see this angel for a brief moment. Although I kept trying to see it again, I couldn’t but I knew it was real because a peaceful aura came over me. I then willingly left the hospital knowing that DJ was in good hands. I took Dr. Russo’s hand and asked him to take care of my baby. He said he would and I completely believed in him. I went home with my husband and my mother went to her house. At approximately 4am, I woke up and heard my husband in the bathroom, crying and praying. I immediately grabbed the phone to call the hospital. At first I could not get anyone on the phone. When I did, they advised me that DJ had run into a rough patch but Dr. Russo was on hand to take care of him. I got to the hospital as soon as I could and from that point on, I did not leave the hospital until my son was released. During this time I literally forgot that Dr. Russo had a life outside of Delmar Davis. One day I sat by DJ’s side waiting for Dr. Russo to come and by early afternoon, when he did not come at his normal time, I panicked. I flipped out and demanded that someone get Dr. Russo on the phone. They were able to get him on his cell phone and he actually agreed to talk to me. I was completely irrational and do you know what Dr. Russo did? He came to the hospital. He had just gotten married but he came to the hospital to talk to me in person. He recognized my hysteria and cared enough to help me manage my emotions by coming to talk to me in person.
Although DJ has residual complications, I thank God for sending Dr. Russo into my life and into DJ’s life. I know that it was not easy to deal with a parent like me who knows absolutely nothing about the heart but willing to tell a cardiothoracic surgeon what to do. Over the past 13 years, Dr. Russo makes an effort to stay in touch with his patients and is genuinely happy when he hears some of the great things these kids are doing. He rejoices on our children’s successes. One of the things Dr. Russo said to me early on is that my child will and can lead an active life just like other kids. I raised DJ with that motto. He runs track, played soccer and leads a very active lifestyle. Dr. Russo has also incorporated the care of the parents into his care for his patients. When I started my Master’s program, Dr. Russo encouraged me and followed up with me to make sure I was still on track. I don’t think that DJ would be who he is today if it were not for Dr. Russo. I didn’t know how to treat a child with congenital heart disease. He did not come with a book. But God sent Dr. Russo into our lives and with the knowledge that Dr. Russo imparted to me and my family, we were able to understand DJ’s condition and treat him accordingly. Every year, DJ and I look forward to seeing Dr. Russo at the Nello Foundation Christmas party. This party is held in honor of a little boy named Nello who lost his battle with congenital heart disease. His family, along with Dr. Russo, is committed to bringing families together to celebrate the lives of our children. Dr. Russo, I don’t tell you this enough . . . Thank you. I love you from the bottom of my heart. DJ is my hero but you are my super hero. Thank you.
Jillian Davis Theorgood
This entry was posted on Wednesday, August 11th, 2010 at 1:03 pm and is filed under Mother's Corner. You can follow any responses to this entry through the RSS 2.0 feed. Responses are currently closed, but you can trackback from your own site.
