Hi, my name is Keith Alvizo, i’m from the Philippines and i'm organizing this fundraiser through gogetunding.com for our little angel/fighter daughter Kadyn’s heart procedure. Kadyn (Kadyn Lamban Alvizo/3years old) was born with Down Syndrome and she was diagnosed with PDA (Patent/Persistent Ductus Arteriosus) 4 months after she was born.
What is PDA (Patent/Persistent Ductus Arteriosus)?
PDA can happen to any baby, but this commonly occurs with females or infants with genetic conditions such as Down Syndrome.
Definition : Patent ductus arteriosus (PDA) is a persistent opening between the two major blood vessels leading from the heart, the Aorta and the Pulmonary Artery. The opening, called the ductus arteriosus, is a normal part of a baby's circulatory system before birth that usually closes shortly after birth, but when the ductus arteriosus does not close this is when the patient is diagnosed with “Patent” (open) Ductus Arteriosus.
The Pulmonary Artery carries unoxygenated blood to the lungs for oxygenation then goes out through the Aorta as oxygenated blood that will be distributed to the body. Since the hole or opening is between this two arteries a “backflow” of oxygenated blood goes through the hole back to the Pulmonary Artery mixing with the unoxygenated blood.
Excess oxygenated blood mixing with unoxygenated blood going to the lungs will cause lung congestion and patient will be prone to pneumonia, water in the lungs and the main risks which are
- HYPERTENSION IN THE LUNGS (pulmonary hypertension) Too much blood circulating through the heart's main arteries through a patent ductus arteriosus can lead to pulmonary hypertension, which can cause permanent lung damage. A large patent ductus arteriosus can lead to Eisenmenger syndrome, an irreversible type of pulmonary hypertension.
- HEART FAILURE A patent ductus arteriosus can eventually cause the heart to enlarge and weaken since it is working harder because of the backflow, leading to heart failure, a chronic condition in which the heart can't pump effectively.
- HEART INFECTION (endocarditis) People who have structural heart problems, such as a patent ductus arteriosus, are at a higher risk of an inflammation of the heart's inner lining (infectious endocarditis) than are people who have healthy hearts.
After our daughter Kadyn was diagnosed in 2016 our pedia-cardio advised that she undergo either surgery or pda occlusion through catheterization by moving a device through the blood vessel up to the pda to close it up. Surgery was less costly than PDA Occlusion/Catheterization.
COST OF PDA SURGERY : 250,000 TO 300,000 Philippine Pesos ($4,900 to $5,900)
COST OF PDA OCCLUSION/CATHETERIZATION : 300,000 Philippine Peso ($5,900 to $7,900)
The cost of surgery seemed ok but the possible side-effects were not that good. Through surgery there might be a permanent effect to her vocal system plus other risks that’s present with surgery procedures since the side of her chest will be opened up and her rib-cage will be slightly lifted. PDA occlusion/catheterization is costly but lesser to zero risk since it would not need surgery just an insertion of a catheter from her groin through the blood vessel up to the PDA, and she could leave the hospital as soon as after the procedure. We opted for the PDA occlusion/catheterization because of the reasons stated above.
We tried to raise the funds for the procedure. Government healthcare in the Philippines could only cover a small percentage of the cost of the procedure (only around 10%). We were able to get help also through a government charity office through the help of a friend, but it would only be able to cover around 100,000 Philippine pesos or around $1,900 US.
We were having problems getting the rest of the funds since also during that time we were still not aware that there are online fundraising websites that people could use to raise funds for all sorts of things. We went back to her pedia-cardio and asked if the procedure could be delayed. The doctor agreed since during that time she still had no complications aside from a normal cough, but the doctor gave us a stern warning that we should monitor her health based on the symptoms that he told us, and that we either send her right away to the hospitals upon seeing the symptoms or do the surgery right away since the health of her heart is at stake.
Three years later just last month, October 14th, we brought our daughter to the doctor for her cough with fever that happened overnight, plus her difficulty in breathing. She was diagnosed with pneumonia and water in her lungs and she was confined. She underwent an echocardiogram to check her PDA since they know her pneumonia was due to the PDA. They saw that the PDA hole remained the same in diameter 8,2mm but the backflow pressure was very high, higher than what was observed in her first 2decho in 2016. From the 14th to the 21st of October, our daughter was confined.
After release and stabilizing her breathing, she was sent home but with back-up oxygen and continued nebulization, plus heart medications that she would take until the PDA procedure can be done. This time her pedia-cardio insists that she get the PDA procedure as soon as possible so as not to worsen her heart condition.
This is the main reason we are going through gogetfunding.com so that we could have the PDA procedure done for our daughter. In several facebook groups for Down Syndrome, we were questioned about why the procedure was not done right away. Unlike in the places of the people whom I have talked to (Canada, UK, US) our healthcare has a smaller coverage. People from 1st world countries like Canada, UK and US have the privilege of total healthcare coverage, and if our daughters condition happened in those countries, the whole cost of the procedure would have been covered and financial assistance would have been offered, but sad to say, we do not enjoy that same privilege here in the Philippines.
Our personal income, and work insurance would also not be able to cover the procedure. We have an average gross monthly income of 45,000 to 50,000 Philippine peso ($890 to $990 US), with an average monthly expense of 44,000 Philippine peso ($880US), leaving us with at best 5,000 Philippine pesos ($110 US). Initial talks with our private health insurance provider resulted to non-coverage since the case is for a congenital heart condition which could not be covered.
The pedia-cardio estimated the PDA Occlusion/Catheterization to run at 300,000 Philippine pesos ($5,900 US), but he is advising to raise a safe figure of 350,000 to 400,000 Philippine pesos ($6,900 to 7,900 US) since the final costs will depend on the hospital in the area that could offer the procedure. The excess would also cover hospital accommodation and pre/post medications. (Fundraising donation fees and paypal fees also considered)
With this we are setting a fundraising target of 350,000 to 400,000 Philippine pesos ($6,900 to 7,900 US). We will try to see if we could raise the funds before the end of November and hopefully have her procedure done by the opening of December.
Although showing signs of being a fighter since she was born (being confined for an additional week after being born due to low blood oxygen levels) and being a very cheerful and happy little girl, she now shows signs that she is affected greatly with her condition. She tires easily, breathes heavily and needs oxygen from time to time. She tries to be her normal self after getting out of the hospital, tries to walk and play with her toys and creates her usual mess in the house but unlike before she tires easily. She also usually has a hard time sleeping in a normal sleeping position on her back and needs to be elevated or we just carry her every night so that she could get a good night’s sleep.
We miss the old happy and energetic Kadyn, we fear the repercussions of her condition but we will definitely fight with everything that we got to let her overcome her heart condition.
With this, we reach out to our friends in our area and in social media, and ask for your help for this fundraiser either through backing her campaign or spreading this to others whom you know could help us with our concern. We apologize for being a bother, and we are hoping for your kind understanding about our situation.
We have posted pictures of Kadyn on the gogetfunding.com fundraising page along with pertinent images with information about her condition.
Again, we are trying to reach out to your kind hearts to help us with this fundraiser, along with your prayers to help save our daughters heart, and bring back the old happy, cheerful and loving Kadyn.