February 08, 2011
Anika is our Heart Baby. She was born on April 17, 2007.
She was so perfect. She was the most beautiful little baby I had ever seen. Anika grew up as a happy and healthy child until she was 8 months old when her pediatrician heard a heart murmur. We got scared but he told us that this diagnosis is actually extremely common. Sometimes these extra sounds are simply the sound of normal blood flow moving through a normal heart. Other times, a murmur may be a sign of a heart problem. After a month, the heart murmur was still present so he advised us to consult a pediatric cardiologist. We immediately consulted a pediatric cardiologist and an Echocardiogram (2d echo) was done. She referred us to the Philippine Heart Center for further diagnosis and treatment.
The 2d echo showed that she had a Single Ventricle defect (basically half a heart), a rare type of CHD (Congenital Heart Defect) with other heart defects such as:
Single Ventricle – A complex heart defect that results in one of the heart’s pumping chambers (ventricles) being underdeveloped.
Dextrocardia - is a congenital defect in which the heart is situated on the right side of the body; a otherwise harmless condition. Or refers to the heart being a mirror image situated on the right side.
Pulmonary Valve Atresia –She has a small pulmonary artery. Blood can’t flow from the right ventricle into the pulmonary artery and on to the lungs so low-oxygen (bluish) blood mixes with the oxygen-rich (red) blood in the left atrium.
Atrial Septal Defect (ASD) - also known as a "hole in the heart". Is a congenital heart defect in which the wall that separates the upper heart chambers (atria) does not close completely.
Thus began our journey to the world of CHD. I will NEVER forget the day we found out about her broken heart. She was almost perfect. I never knew there were heart defects until I had a baby with one. Her case is rare and it happens 1 in 100,000 births. A lot of moms have healthy kids but why me? and why Anika? I have always asked that question. Her dad and I had so many plans for when she came to this world but it turned out to be so many twists and turns of fate.
We had regular check ups at the Philippine Heart Center where several tests such as blood tests, chest x-ray, Electrocardiography (ekg) and Echocardiogram (2d echo) were frequently done. During a case presentation last December 2009, the doctors have told us that her heart defect is rare and inoperable in the Philippines and we should be prepared. They are not sure if they can offer surgery. The surgery Anika needs is most performed in the United States. However, they told us that there is a Japanese surgeon who travels to the Philippines once a year to perform surgery for complex cases. But we still have to wait in line and the surgeon performs only 5 surgeries in a year. In order to find out if she can be a candidate for surgery, she needs to undergo a Cardiac Catheterization and CT Angio Scan. As a patient from the social service division, we have to wait in line to be given a schedule. We patiently waited for almost a year but we were not given a schedule and we did not hear about the Japanese surgeon's visit at all. I feel sad that they are giving false hopes to the hundreds of children who have different struggles and find ways to travel from the province just to keep up with the check-ups and waiting in line starting at 5am to show that they are still alive, hoping they can have surgery just like my little girl. My heart goes out to these kids and their family.
Since Anika's case needs immediate attention, we transferred her as a private patient and the Cardiac Catheterization was scheduled. A Cardiac Catheterization is a procedure wherein a catheter is inserted into a chamber or vessel of the heart. A long, thin, flexible tube called a catheter is put into a blood vessel in your arm, groin (upper thigh), or neck and threaded to your heart. Through the catheter, doctors can check blood flow in the arteries, blood flow and blood pressure in the chambers of the heart, find out how well the heart valves work, and check for defects in the way the wall of the heart moves. Results from cardiac catheterization help determine whether treatment or surgery or may be effective.
On January 14, 2011, we were admitted at the PHC for the Cardiac Catheterization. Prior to the procedure, she underwent Phlebotomy because the CBC showed that her hematocrit is high, meaning she has excessive numbers of red blood cells. Phlebotomy is a procedure in which blood is taken from a vein.
The Cardiac Catherization took almost 3 hours and when they got her out, she was placed on a heart monitor until completely awake. They frequently checked vital signs (temperature, pulse, breathing, blood pressure), circulation, the heart monitor, and the pressure bandage placed over the cath insertion site. Thanks to the doctors for taking good care of Anika. The catheterization confirmed that her pulmonary arteries are small. The good news is that surgery is possible. However, in order for Anika to survive, she will need 2 surgeries:
Glenn Shunt & Pulmonary Reconstruction– Before the bidirectional Glenn shunt can be performed, her pulmonary artery needs to be enlarged. The goal of the Glenn Shunt is to bypass cardiac circulation and allow some blood to get to the lungs for oxygenation, without overworking a weakened or tiny ventricle. This is achieved by taking the superior vena cava, which is returning blood to the heart for transit to the lungs, and hooking it directly to the pulmonary veins. Such a move creates passive bloodflow to the lungs, completely bypassing the heart.
Fontan Procedure - A Fontan procedure is a palliative medical operation in which the right atrium of the heart is attached directly to the pulmonary artery, bypassing the right ventricle. The Fontan procedure allows blood to travel passively from the atrium into the pulmonary artery, which takes blood to the lungs to get re-oxygenated, instead of passing into the right ventricle, where it is pumped into the pulmonary artery.
We are trying to prepare ourselves for these surgeries. There are no words to explain how we feel. Although her heart will never be perfect, she can survive.
For the first surgery, we need to raise PHP 450,000. She needs the first surgery soon as possible. But at this point we really do not know how to have all the money that is necessary. We are hoping that the spreading her story through the internet will help our daughter survive. I know somewhere out there, there are people who want to help. Please help us in raising the funds to help her get her surgery.
We have some heart items and handmade creations for sale. These are items that we have made by our own hands. If you wish to buy, the proceeds will help finance Anika's surgery. If you would like to make a donation, please visit donate.
I am reaching out to the world because my daughter means a lot to me. Anika is truly a miracle baby. There are no words to describe how strong this little girl is. She is a sweet, happy, loving and smart child. When she was diagnosed, we were told that there's no guarantee for survival but she is still here with us even without the surgeries so we will fight for her no matter what.
I always tell Anika that I will give her much of life as I can. I want to do it so bad but I need all your help to give me a chance to do it. Please help me save my daughter. She is only three years old and could dream of only small things. She is too young to imagine all the struggles that await her. The world is too rich to take this child’s dream. I am knocking to your hearts to help us in this endeavor. To those who want to help, thank you so much on behalf of our entire family.
Please help us pray for Anika. Thank you to our families and friends who stand beside us. Special thanks to Dr. Nancy and Dr. Dorotan for trying so hard to help us.