Truncus Arteriosus 1

On September 12, 2007 my nephew - Daniel - was born through a normal delivery. His new born tests showed that he was a healthy boy. My sister and her husband were so happy to have him. But on Daniel's third week, my sister noticed an irregular breathing which she assumed as an ordinary cough. They brought Daniel to the doctor and they were advised to have him X-rayed. The following day, they brought Daniel to the hospital and had his X-ray. The next day, upon getting the results of the X-ray, they were told to see a pediatric doctor specializing in cardiology.

They began having doubts and fears about his condition. When the cardiologist saw the result of his X-ray, they were anguished to find out about Daniel's condition. After that, they went to the Philippine Heart Center for more examinations. His 2D echo clearly showed the he had TRUNCUS ARTERIOSUS 1. That time, he was the third infant diagnosed by the Philippine Heart Center who had that rare congenital heart condition. Truncus arteriosus occurs in less than one out of every 10,000 live births. It makes up 1 percent of all cases of congenital heart disease.

My sister and her husband really cried hard that day and the days after. Acceptance came a few weeks later. It was too difficult for them to believe that a pregnancy as healthy as hers would result to a congenital disease. They have been waiting for Baby Daniel.

We further learned that this condition could not be detected by the new born screening tests. It would only manifest three weeks after birth. True enough, it was Daniel's third week when we discovered that he had Truncus Arteriosus 1.


The doctor's explained to us that there are really no clear cut symptoms or causes to detect this kind of congenital heart condition. As with most forms of congenital heart disease, the causes of truncus arteriosus are unknown. In experimental animal models, truncus arteriosus has been linked to abnormal development of cells from the neural crest that normally inhabit the outflow region of the developing heart. Up to now, the doctors can not really pinpoint the exact culprits. In addition, the information I saw from Lucile Packard Children's Hospital's website also have the same views.

" Some congenital heart defects may have a genetic link, either occurring due to a defect in a gene, a chromosome abnormality, or environmental exposure, causing heart problems to occur more often in certain families. Other times this heart defect occurs sporadically (by chance), with no clear reason for its development."

How does this condition affect babies like Daniel? The following are the most common symptoms of truncus arteriosus. However, each child may experience symptoms differently. Symptoms may include:

• cyanosis
• fatigue
• sweating
• pale skin
• cool skin
• rapid breathing
• heavy breathing
• rapid heart rate
• congested breathing
• disinterested in feeding, or tiring while feeding
• poor weight gain
  

And Daniel had experienced all of these things.


thelma

Daniel - Our Little Angel

Daniel is not only my sister's little angel but also ours. He arrived at a time when my mother was bored and wanted to be more productive. Thus, his birth was really much-awaited.


He is our angel. The first time we saw him in the nursery, we already know that he would be such an angel. He has a rosy complexion at birth and his long legs are very noticeable. We presumed he would be taller than the rest of our family. His face is round, his eyes big and round, his lashes long, and his lips really red.


As the days passed by, he proved to be a very charming baby. Despite the discomforts that he was experiencing, he always have a smile for us. He would respond to us whenever we talk to him, he always wanted to have someone with him. He does not want to be left alone. We would always take turns watching him and talking to him. He would smile at us especially when we play his favorite music - Edu Manzano's "papaya song."


He fills our house with warmth and tenderness. He make us stay longer in the house. Before he came, our house seemed empty. But when he came, there's never a dull moment

An Ambulance Ride

Experiences make us strong especially when those experiences taught us important lessons in life. These experiences come in different packages; sometimes they bring us joy; at times they teach us invaluable lessons; and most of the times they make us wish they never happened at all. I have had my shares of life experiences: happy, wonderful, memorable, enriching, disappointing, sad, and difficult. And because these experiences are sometimes sad, difficult, and disappointing, there is one experience I would never want to happen twice in my life. I still remember the day I rode at the front seat of an ambulance. It was Daniel’s (my nephew) third day in the ICU at MCU Hospital. He had been in comatose for three days and when he finally woke up, the doctors allowed us to transfer him to the Philippine Heart Center where we had already made arrangements for his transfer. At 4:30 in the afternoon on February 2 last year, I took the ambulance ride which was my first and hopefully the last. Beside me was my brother-in-law while my sister was at the back together with two doctors, a nurse, and two medical assistants; all from MCU Hospital. I could still see the frantic look on my sister’s face as we began the trip, slowly at first. Daniel was on a manual respirator and it was really difficult for he was having seizures and the slightest discomfort could cost him his life. Barely five months old, his small body could hardly take what was happening to him. As we drove along EDSA, my heart thumped like the beatings on a drum. The siren was non-stop, and so was the honking of the ambulance’ horn. I could feel my blood rushing inside me, my face turning red, and my head swelling. I wished I could swear but I couldn’t. I wished I could just go down and stop all the cars slowing us down each time I hear my sister shriek when Daniel stopped breathing. I wished I could wring the necks of the insensitive drivers who tried to overtake and slow us down as we looked flushed and hopeless inside the ambulance. All I could do at the time was to plead God to let us arrive in time at the PHC. The 15-minute ride felt like eternity. As Daniel was carefully lifted up to the stretcher and rushed to the emergency room where the head of the pediatric section was already waiting for him, I uttered a silent prayer thanking God that Daniel made the short trip from MCU to PHC. As darkness slowly engulfed the atrium where I was waiting for my brother-in-law, I could still feel the rapid beats of my heart. It was almost midnight when we were allowed to go inside the ward. Only then did my heart’s rapid beats begin to subside. (tvvillaflores-22/01/09)

Truncus Arteriosus 1

Truncus Arteriosus 1

On September 12, 2007, my 28-year-old sister gave birth to her first baby (a seemingly healthy boy) through normal delivery. We named the baby Daniel. Two weeks after his birth, my sister noticed that her baby was having difficulty in breathing and she suspected that it could be the symptoms of a cold. They brought him to a clinic and my sister was advised to have Daniel undergo a chest X-ray. They got the results of the chest X-ray on October 2 and they were immediately instructed to bring Daniel to the Philippine Heart Center for an echocardiogram—a procedure that evaluates the structure and function of the heart by using sound waves recorded on an electronic sensor that produce a moving picture of the heart and heart valves.

That Wednesday morning, we brought Daniel to the Philippine Heart Center and after the echocardiogram; there the doctor told us that baby Daniel has a rare heart disorder which is called TRUNCUS ARTERIOSUS 1. What is truncus arteriosus 1?

Truncus arteriosus is a congenital (present at birth) defect that occurs due to abnormal development of the fetal heart during the first 8 weeks of pregnancy. The heart begins as a hollow tube, and the chambers, valves, and great arteries develop throughout the first 8 weeks of pregnancy. The aorta and pulmonary artery start as a single blood vessel, which eventually divides and becomes two separate arteries. Truncus arteriosus occurs when the single great vessel fails to separate completely, leaving a connection between the aorta and pulmonary artery.


In layman’s term, truncus arteriosus 1 is a condition where an artery in the heart does not split into two and remain as one blocking the regular flow of blood and oxygen.


This condition makes Daniel very uncomfortable. He has developed a very sensitive reaction to anything and everything around him. Even the slightest and the softest sound can startle him. Once startled and irritated, he begins to cry which further alleviates his discomforts. The doctor reminded us that as much as possible we should not let him cry for longer periods of time. We were also told to really watch his health closely for Daniel could not afford to have a fever, cold, or flu for it will be very critical for him.


Truncus arteriosus must be treated by a surgical repair of the defects. Surgery is usually performed after the infant is two weeks old but before the blood vessels in the lungs are overwhelmed by extra blood flow and become diseased. The operation is performed under general anesthesia by detaching the pulmonary arteries from the common artery and connecting to the right ventricle using a homograft (a section of pulmonary artery with its valves intact from a tissue donor). The ventricular septal defect is then closed with a patch.

The information and diagram was quoted from: Lucile Packard Children's Hospital

http://www.lpch.org/diseasehealthinfo/healthlibrary/cardiac/truncus.html