My Son Is a Survivor - by Fareeha Rahman

Hi, my name is Fareeha and my husband is Fahim. This is the story of my son who was born in May 1994 with a congenital heart defect called Tetrology of Fallot. Fahad was born in India where I was completing the final semester of my Bachelors Degree in Electronics and Communications Engineering. He weighed 5lb and 12oz at birth and was born on May 26, 1994, 2 weeks before I was due. I had a C-section for failure to progress.

Although his weight was slightly low, he was found to be healthy and active. The neonatologist discovered a heart murmur but said it was an innocent murmur and that there was no need to worry. We brought Fahad home and I nursed him on demand. He was a very active baby and had a very good appetite. I had my final exams 20 days after his birth. Fortunately I had my mother’s help with the baby and did well in my exams. I passed my degree with distinction.

After my exams were over, I had more time to play with the baby. One day, when Fahad was a month old, I noticed him turning blue. Immediately, I called my brother who was in the final year of medicine then. We took him to his pediatrician who then sent us to a cardiologist. The cardiologist ordered some tests on him and diagnosed that Fahad had some serious heart defects. My world crumbled right there, I knew I would never be the same. He went on to say that to correct these defects, nothing could be done at present but Fahad would need to have surgery later on, when he was older. The doctor also advised us to give him Inderal so he would have less blue spells or cyanotic spells as they are called. I am a very optimistic person but that was the scariest day of my life and I was filled with grief that my son was so sick and I could do nothing to help him. After I came home, I made a phone call to my husband in USA and literally told him the news crying. He was very worried too.

Fahad began having more cyanotic spells (5-6 each day). He would cry for up to a half hour every time and would not quiet down. This was very scary especially since he would turn more and more blue with crying. I would try my best to quiet him down and to make him as comfortable as possible, but generally, he would not stop until he was thoroughly exhausted by crying and screaming at the top of his voice. That was a very stressful period for me. I was a very heartbroken new mom and I did not know what else to do other than cry all the time.

Meanwhile, my husband and I decided to take our son to California, USA since we have more competent doctors here. Our journey to the USA was very scary and very long. Fahad had a couple of blue spells while we were in the air. After we got here, we had him seen by a pediatrician who referred us to Dr. Michael Griffin (an excellent Pediatric Cardiologist). Dr. Griffin examined Fahad and after performing an Echocardiogram and EKG, diagnosed that Fahad had Tetrology of Fallot which is a combination of four defects. He explained the defect to us in detail and informed us that Fahad needed surgery immediately in order to survive.

Tetrology of Fallot is a cyanotic congenital heart disease characterized by four defects. In this disease, the right ventricle is enlarged, there is an overriding aorta, there is a hole between the ventricles due to which the pure and impure blood gets mixed, and the pulmonary artery is narrow.

He spoke with Dr. Frank Hanley (Pediatric Cardiac Surgeon) who agreed to examine Fahad. He would perform the corrective surgery on him, if upon examination Fahad was found to be strong enough to handle such an extensive procedure. We found out later that Dr. Hanley, who was then the Professor and Chief of Cardiothoracic Division at UCSF is one of the best Pediatric Cardiac surgeons in the country. We were sent to the UCSF Hospital immediately. The ride to the hospital was about one and half hours. I held Fahad and cried all the way. That was on the night of 21st July 1994 and Fahad was seven weeks old then. Once there, Fahad had another cyanotic spell or Tet spell as it is called and had to be stabilized. He was given oxygen and was closely monitored. They discontinued the Inderal that he was on previously. Dr. Hanley came in the next morning and said Fahad was strong enough to be operated upon. He described the surgery he would perform and set the date as 25th July which was the following Monday. He said if Fahad’s condition got worse, he would have to perform an emergency surgery on him over the weekend with the available medical staff, but he hoped he would not have to perform the surgery in an emergency as this is not good for the patient.

Fahad continued to have more Tet spells over the weekend and we were very worried. Fortunately, he came through from each one. Fahad’s blood group matches his fathers so Fahim donated blood for him on Saturday which he would need the next day. Even now when he remembers it Fahim feels very happy that his blood helped his son. Even at the hospital, Fahad would cry himself into a spell every time he was hungry and needed to be nursed. The day before the surgery, I was very sad as one of the doctors had informed us about the risks involved in Open Heart surgery. He said that if Fahad had a Tet spell on the operating table or if there was a single air bubble in the Heart Lung machine tubing when it was connected to him, he could die.

The night prior to the surgery, Fahad had to stop feeding for 5 hours prior to the surgery. We were very scared and prayed throughout. That night, after my prayer, I felt the warmth of faith enter my heart. Something told me not to worry because God had taken everything in His hands and He would protect my son. Fahad’s grandparents were there at the time of his surgery. The surgery was about three and half hours. The hours seemed agonizingly long.

Finally he was shifted to the NICU and Dr. Hanley came down with him. He said Fahad had done wonderfully and a complete repair had been performed. Those were the most beautiful words I had ever heard. Those words gave me more faith that God was by him and He would help Fahad fight and win his battle against the heart defect. All I could reply was to say, “Thank-you” over and over. Standing in front of me was the man who had helped save hundreds of babies with heart defects and had earned the appreciation of so many parents and grandparents. I was so overcome with emotion that I was unable to tell Dr. Hanley that God had chosen him to give me the most precious gift of all, time with my son. I was unable to tell him that I appreciated the fact that he had accepted to perform the surgery on my son in spite of his extremely busy schedule.

Dr. Hanley had closed Fahad’s ventricular septal defect with a patch of the pericardium. He had corrected the overriding aorta and enlarged the pulmonary artery. Prior to the surgery Fahad’s oxygen saturation levels would go to 30 to 40% when he cried. After surgery, they have always been 100%

When I stepped into the NICU, I was shocked to see innumerable wires and tubes hooked onto my baby. I kept wondering how this little baby had withstood so much. He looked much better the next morning, when they removed the ventilator tube from his mouth. I cannot thank God enough that Fahad started breathing on his own without any complications the moment his tubes were removed. The next day he was shifted to a room on the floor.

Fahad’s recovery was smooth but slow and painful. I was with him the whole time and went home with him after 21 days in the hospital. Since I had not completely recovered from the C-section, at times I fell asleep while the nurse took care of him. At one of those times, some people found it their duty to remark, “What kind of mother is she? She is not worried for her kid.” As you can imagine, such remarks are the most hurting remarks that anyone can say to a mother. Only a mother’s heart knows what she suffers for her child. She does not have to show it to the world and God knows what is in her heart. He understands her best. During the entire time of Fahad’s surgery and recovery period, I was numb with fear and had an overwhelming feeling of sadness. Those were the most difficult days I went through as a mother. At times I felt as though my insides were being ripped out. I do not openly show my tears to people that I am not close to. Also, I kept up a brave front in spite of my fears because I wanted my husband to feel more optimistic about the surgery. He worked long hours during those days as he had taken some time off prior to the surgery to bring us to the USA. He used to visit us every night after work. He too was often sad that there was nothing that could be done when Fahad was in pain.

The chest tubes stayed in for 15 days after surgery during which time blood drained from around the heart. Some doctors were concerned that the blood kept coming out even weeks after the surgery. Once Fahad kicked out one chest tube and he had to have another incision done to put the tube in. They could not give him any anesthetic when this was done. All they did was literally push us out of the room while they made another cut right next to the previous one and pushed the tube in. I hate to think how painful it must have been for my little darling but I know it was necessary. A few days later, Fahad kicked out both the tubes again. This time the doctors did an X-ray and said he did not need the tubes any more. Later, one of the nurses came in and asked if we wanted to keep the tubes as a keepsake to show Fahad later. I did not want to be reminded of those tubes again and again so I declined. Little did I know that even without those chest tubes to remind me, I would be haunted by those painful memories. I have some other very painful memories that I cannot even bring myself to write about. Perhaps some day I will have the strength to relate most of what happened at the hospital. For now all I can say is that my son endured a lot, he is a fighter. Fahad means, “Tiger” and indeed my son fought his illness like a little tiger.

Fahad is now a very active ten year old. Fahad visits his Pediatric Cardiologist, Dr. Griffin every year. He is an Honor student and is well liked by his teachers and classmates. He takes no medications and has no restrictions in his sports or outdoor activities. He loves basketball and is a great swimmer. Nobody ever suspects that he has had surgery before. Even his scar is very light. I told him the story of his surgery when he was six. He has taken it well and does not ever consider himself different than his friends in any way. Fahim and I had three other kids born after Fahad. They are a boy who is almost 8, a girl aged 4 and a boy of six months. None of them have any heart defects although each time I have been very scared of it. Fahad loves to be the BIG brother!

I wish of course that Fahad had been born with perfect health. But, I wouldn’t trade my experiences with him for anything. We are very thankful that God saved Fahad’s life, he is our darling boy. May God bless him with a long, happy and healthy life.

Keywords: congenital heart defect, firstborn, TOF, Open heart surgery, faith in God

About the Author
Fareeha Rahman,

The author is a 32 year old who loves to write. She is a software engineer by profession, living in the Silicon Valley. Currently she is working on her first fiction book.