I know most of y'all don't know me. I have been more of a lurker than a poster... I am just needing to organize my self and prepare myself to tell the family and friends about what is going on so thats the main purpose of my post. Another reason I am posting is because I posted about promotional baby items last night and then got the bad news today about my son...
The hardest part of this news is I was not able to be with my wife to support her. I am still in college and I had a test get rescheduled for today. (when we made the appointment with the specialist the test was scheduled for Wednesday of last week.) The a*.. hole professor wouldn't let me reschedule the exam. So it was fail the class or attend the Dr. appointment with my wife.
Kenneth (my yet to be born son) has Hypoplastic Left Heart Syndrome. More about the exact specs of the syndrome to come later.
The cardiologist said that he'll be getting a major heart surgery in the week following birth, and to expect him to have to stay in the NICU for about a month after that. He will be blue following this first surgery, until the second surgery.
He will need a second major surgery within a year, and a third before he's 3. The success rate is fairly good now, but if for some reason the surgeries don't take, he will be put on the heart transplant list.
Apparently, even 15 years ago, most babies with this heart defect died. They've improved surgical techniques enough now that he has a fighting chance.
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Hypoplastic Left Heart Syndrome (HLHS) is one of the most complex cardiac defects seen in the newborn and remains probably the most challenging to manage of all congenital heart defects
HLHS is a condition in which the left side of the heart is underdeveloped. Usually, the left ventricle, the left atrium, the mitral valve and the aorta are affected. It is called a syndrome because it can encompass several different variations and varying degrees of development of these parts of the heart.
To understand HLHS, it is helpful to understand how a normal baby's heart works. The heart is comprised of four chambers: the upper chambers are called the left and right atria, and the lower chambers are called the left and right ventricles.
Very simply, in a healthy heart blood flows from the right atrium to the right ventricle where it is then pumped through the pulmonary artery to the lungs to be oxygenated. Blood then flows back to the heart via the left atrium to the left ventricle, which pumps this oxygenated blood through the aorta out to the body. This is how the body's organs and tissue receive oxygen, which is vital. When a baby has HLHS, the left side of the heart is underdeveloped so it cannot sufficiently pump the oxygenated blood out to the body.
Babies with HLHS do not have problems while in the womb - it is only after birth that the heart fails to work properly. This is because all babies receive oxygen from the placenta while in the womb, so blood does not need to go to the lungs. In addition, there is an opening between the pulmonary artery and the aorta, called the patent ductus arteriosus (PDA) that is present in all babies. It allows the blood to go from the right ventricle out to the body, bypassing the left side of the heart.
The PDA usually closes a few days after birth, separating the left and right sides of the heart. It is at this time that babies with undetected HLHS will exhibit problems as they experience a lack of blood flow to the body. They may look blue, have trouble eating, and breathe rapidly. If left untreated, this heart defect is fatal - usually within the first few days or weeks of life.
Once HLHS has been diagnosed, a drug called prostaglandin is given to keep the PDA open until surgery is performed. There are two surgical options for treating HLHS: a Heart Transplant or the 3-Stage Surgical Procedure, the first stage of which is called the Norwood procedure
