Meet Jamian

03 July 2015

Our baby boy Jamian is 6 months old. We are blessed as all parents are with sleepless nights, and the usual trials and tribulations that newborns create.
What makes our family different is that Jamian was born with a VSD, (Ventricular Septal Defect), which is compounded by a PDA, (Patent Ductus Arteriosus).  My son has a hole in his little heart.  Its a common heart defect that is present at birth (congenital).  He was diagnosed just 8 weeks after he was born. The hole occurs in the wall that separates the heart's lower chambers (septum) and allows blood to pass from the left to the right side of the heart. The oxygen-rich blood then gets pumped back to the lungs instead of out of the body, causing the heart to work harder.
My poor little guy breathes heavily and so fast that when I place my hand softly on his chest, I can feel his too rapid heartbeat.  In his case, its a small hole, but bi-weekly cardiologist visits are important, so that he can be monitored with the hopes that the holes will close on their own.
You might be thinking...holes?  There are two?  The PDA is actually another unclosed hole in the aorta.  Before a baby is born, the fetus' blood does not need to go through the lungs to get oxygenated.  The ductus arteriosus is a hole that allows the blood to skip the circulation to the lungs.  However, when the baby is born, the blood must receive oxygen in the lungs and this hole is supposed to close. If the ductus arteriosus is still open, the blood may skip this necessary step of circulation. Thankfully, that hole is small and our doctors have every hope that this too will close on its own.
I wish that I could stop here.  There is one more problem with Jamian's heart.  He has a leaky valve. Leaking through the valve is also called valve regurgitation.  The valves consist of flaps that open to let blood flow in one direction as it moves through the chambers of the heart.  Then the valves close to keep blood from flowing backwards into the chamber it just left.  Except for the mitral valve, each valve typically has three flaps. The mitral valve has two flaps.  Any of the four valves can become leaky. This means that just after the heart squeezes and pumps blood forward, some blood will leak backward through the valve.
My son's fast breathing does not help with his eating. He is a "little" little guy, Born weighing just 5lbs 11oz. Even now, 6 months later, he is weighs only 12lbs.  This is not an average weight for babies this age.
On March 27, 2015, we rushed to the ER because for a few days, baby Jay had low grade fevers.  He was coughing, had a runny nose and was very congested. He was admitted and diagnosed with RSV.  Respiratory syncytial (sin-SISH-uhl) virus, is a respiratory virus that infects the lungs and breathing passages. Healthy people usually experience mild, cold-like symptoms and recover in a week or two. But RSV can be serious, especially for infants and older adults. In fact, RSV is the most common cause of bronchiolitis (inflammation of the small airways in the lung) and pneumonia in children younger than 1 year of age in the United States. In addition, RSV is being recognized more often as a significant cause of respiratory illness in older adults. After being in the hospital for over 2 weeks being clinically treated for it, we were able to go home on April 7th.
It did not end there. We only just returned home today, May 3, 2015 after spending another 4 days in the hospital because my son has developed pneumonia. He is on antibiotics and will be for the next 6 days.
He really needs to get his mitral valve repaired in order to avoid getting any more sick and getting any more infections.  There are 3 really great hospitals in NYC that can perform this surgery.  The one we chose is not in network because it's out of state.
There have been many medical bills and expenses thus far. Now that we are facing the possibility of having to pay for the surgery, we are humbly asking our friends, family and anyone who is able for support, donations and help.
**On May 27, 2015, Jamian's Mitral Valve was repaired,  they also closed the PDA,  Thry were unable to reach the VSD. He now has modermoderate leakage and he's currently on both Lasix and Enalapril to help stabilize that. We take him every two weeks for check up with his cardiologist.

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