Baby Whalin #3's Condition
So its called abnormal Hypoplastic Left Heart Syndrome and to be honest with you I had never heard of it in my life. Now that it has been diagnosed to my son I hear about someone who knows someone with it. But to give you an idea - it's quite rare. It affects one out of every 5,000 babies born, in the United States, about 1,000 babies are born with HLHS each year. See I told you we were special ;-)!
How does it happen?
Well, that's a great questions one that I have been asking myself over and over again. However according to health care providers - THERE IS NO RHYME OR REASON. They do know that out of the children that are affected about 2/3rds are boys. And that most babies that are born with it are otherwise healthy. So, for some unknown reason, the left side of the heart does not develop properly while the baby is in the mother's womb.
What's the difference between a healthy heart and one with HLHS?
Well, for a minute let me take you back to science class. The heart (a healthy one) has four chambers - the two on top are called the atria and the two lower chambers are ventricles. A wall divides them causing the right and left side. The ventricles are the pumping muscles that help bring the blood back out to where it needs to go, either the lungs or throughout your body. To keep this simple and not to confuse anyone - the right side of your heart pumps to your lungs to get oxygen and the left side pumps throughout your body. A child that has HLHS has a small left side and is unable to enough blood to meet the body's needs.
Now let me be clear - there are different types of HLHS. My son's condition is being called abnormal HLHS because not all the parts that are affected in normal HLHS are being affected in his heart. In short the doctors and surgeons have told me that the way to think of it is that he is going to be born with half of a heart. His left ventricle never really formed due to having a hole in the wall between the two. Over time the hole that he had has closed and diagnoses have changed for us but in the end nothing has changed with his left ventricle being less than half the size of his right.
How is this corrected?
Well, corrected it is not - worked around is more like it. Baby Whalin and other children with HLHS are looking forward to at least three surgeries in their lifetime. The Norwood is the first surgery that baby Whalin will be having - this will be taking place a few days after birth, normal completed between 3-7days. For us - I'm being induced on October 28th and the surgeon has schedule surgery on October 31, 2014. Basically, what will be done is that the blood will be redirected to bypass the left side of the heart. So the right side of the heart becomes the main pumping chamber for both blood to the lungs and to the body. Again, I don't want to get to technical with all this because I am not the expert in the matter, but that gives you an idea!
The other two surgeries: The Hemi-Fontan (completed around 3-6 months of life) and the Fontan (completed around 2 years of life) are to strengthen the original surgery. These are much less invasive to the child. The second one (Hemi-Fontan) is to reduce the amount of work the right ventricle is doing, after this stage the right heart will only have to pump blood to the body because the work of pumping blood to the lungs is taken away. The third stage (Fontan) is completed so that the rest of the blue blood (or blood that needs oxygen) coming back from the body goes straight to the lungs.
The other option that is out there for children with this condition is a complete heart transplant. This is not an option at this point for my son. The doctors are very confident that the other steps will provide him with a strong viable heart. However, if we need to travel that road later it is an option that would be considered - but you got to remember that there are more children that needs hearts then hearts are available.
What's the Outcome?
Who knows! I wish I could answer that one question too! I will tell you that babies born before 1984 with HLHS passed away with in weeks of life. So as far as what the future holds we don't know.
As one book that I have one it says "In a very real sense, these children are pioneers!"
But as for recovery times, well that also depends on baby. We are being told that for the first surgery normal recovery can take anywhere from 2-4 weeks. For the other two, like one week. These are times that baby Whalin will be in the hospital, full recovery will be much more than that. And the other concern is baby's weight due to the fact that he is taken away right away he is not given the chance to learn to eat - so most children go home on a feeding tube.
So there it is in a nutshell. The what of it all! If you have questions about it please don't hesitate to ask. I want everyone to be as knowledgeable as possible - with knowledge comes power and with power more can be accomplished. So tomorrow I hope to blog again, I will provide you with our story of finding out about the condition and how it has affected us. Until then . . .
Peace, Love, and Cupcakes!
Jillian Whalin
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