Now that we've shared the news of our little one's condition I thought I should probably explain what it is. Keep in mind that I'm the Arts/Humanities half of the marriage so I'm just going to explain it in my version of layman's terms and link a bunch of sites and websites where you can get more technical information if you would like.
Transposition of the Great Arteries is a serious but rare congenital (meaning they were born with it) heart defect that affects the "plumbing" to the heart. Often there are many other complications associated with the heart when this occurs (i.e.: a weak heart muscle, missing chambers, etc) but we are very fortunate to know already that our baby has an exceptionally strong heart with all four chambers perfectly developed. Basically the two main arteries that draw blood away from the heart are switch or transposed.
Here's a diagram from the Mayo Clinic showing what the heart is supposed to look like, in comparison to what our baby's heart looks like with TGA:
Transposition of the Great Arteries is a serious but rare congenital (meaning they were born with it) heart defect that affects the "plumbing" to the heart. Often there are many other complications associated with the heart when this occurs (i.e.: a weak heart muscle, missing chambers, etc) but we are very fortunate to know already that our baby has an exceptionally strong heart with all four chambers perfectly developed. Basically the two main arteries that draw blood away from the heart are switch or transposed.
Here's a diagram from the Mayo Clinic showing what the heart is supposed to look like, in comparison to what our baby's heart looks like with TGA:
The pulmonary artery is supposed to take deoxygenated blood to the lunges to where it is then sent back to the heart so that the aorta can pump the oxygenated blood to the body. A heart with TGA has these two connections reversed. This means that the aorta is sending deoxygenated blood back to the body while the pulmonary artery is sending oxygenated blood back to the lung. Without treatment our baby would die shortly after birth, essentially from a form of suffocation.
From what we've read, it seems that this condition is often undiagnosed until after birth, making the whole situation a lot scarier. On our recent flight to Houston Chris and I were seated next to a pediatric cardiac surgeon from the Houston Children's hospital and found out that in the US they don't scan for this in their ultrasounds. They're only asked to ensure that the heart itself is ok, not the connections to the heart, which is why it's often missed. We are so incredibly grateful to the first doctor (we don't even know who he or she is) who caught this on our anatomy scan ultrasound and requested we be sent back for a second assessment.
Now that you have an idea of what TGA is, here's how it's treated, or at least how our baby will be treated. I'm not sure if it's the same everywhere but this is what they do in Canada and the US.
Before birth there is a tiny blood vessel that connects the aorta and the pulmonary artery which closes shortly after birth. Our baby will be given a shot of something (I'm sure they told me what it's called but I had a lot running through my head the day we learned everything) that will keep that connection open for a few extra hours. During that time baby will be send for his first procedure, called a Balloon Atrial Septostomy.
From what we've read, it seems that this condition is often undiagnosed until after birth, making the whole situation a lot scarier. On our recent flight to Houston Chris and I were seated next to a pediatric cardiac surgeon from the Houston Children's hospital and found out that in the US they don't scan for this in their ultrasounds. They're only asked to ensure that the heart itself is ok, not the connections to the heart, which is why it's often missed. We are so incredibly grateful to the first doctor (we don't even know who he or she is) who caught this on our anatomy scan ultrasound and requested we be sent back for a second assessment.
Now that you have an idea of what TGA is, here's how it's treated, or at least how our baby will be treated. I'm not sure if it's the same everywhere but this is what they do in Canada and the US.
Before birth there is a tiny blood vessel that connects the aorta and the pulmonary artery which closes shortly after birth. Our baby will be given a shot of something (I'm sure they told me what it's called but I had a lot running through my head the day we learned everything) that will keep that connection open for a few extra hours. During that time baby will be send for his first procedure, called a Balloon Atrial Septostomy.
In this procedure they will send a catheter up through a vein in the groin or bellybutton into the heart with a small balloon on the end. Once in place they will puncture between the atria, inflating the balloon, and pulling it out to create a hole in the heart that allows the blood to mix. This allows some mixed blood (not fully oxygenated) to flow to the body, stabilizing the baby and buying us a few days to fly (baby on a fully staffed/equipped med-evac jet, Chris and I on a regular commercial flight) out to Edmonton or Vancouver for surgery.
Once in Edmonton or Vancouver our baby will be given a bed in the Neonatal Intensive Care Unit - NICU - (we will be put up in a hotel near the hospital) until he is scheduled for surgery. Baby will undergo a full 3-9 hour open heart corrective surgery where they will cut both the aorta and pulmonary arteries and re-attach them where they belong and stitch up the hole created by the balloon septostomy. After surgery he will remain in the NICU until he is stabilized (they say usually 2-3 weeks) at which point he will be flown back to the Winnipeg NICU on the med-evac (we will again travel back on a regular commercial flight) until he is cleared to come home. This could be a few days or a few weeks.
I've come to a point where I'm able to talk about TGA, but seeing pictures and videos of it is still hard. Truthfully, I can't handle more than about 10 seconds before I lose it. But there is a really great, and very succinct, video series from the Children's Hospital of Philadelphia that gives you a clear idea of the whole process which I'll post bellow along with some information links.
And despite the situation there are some positives to keep in mind. The corrective surgery has a 95-98% success rate! That's huge! Plus we're going into this knowing in advance what (for the most part) is wrong which gives us time to mentally prepare for our baby's rough start. And, presuming TGA is the only thing wrong and the surgery goes well, there should be no long term effects on our baby's physical or mental development. Provided there are no other complications, he will be able to live a normal, active life without any delays. We will still need to take him for yearly checkups which he will have to continue for his entire life, but that is only to check in.
There is still however the chance that our baby could have another condition or genomic abnormality (there is a heightened risk of Down syndrome) that is currently only presented in the heart. We won't know for sure until we get to actually meet him and have the genetic testing done. And the thought of something else being wrong does nag at the back of my mind so I'd be lying if I wasn't a little worried. But I trust that God will give us the strength to handle whatever the situation may be and we are so blessed to have an incredible support system of family and friends who helping us through everything.
Once in Edmonton or Vancouver our baby will be given a bed in the Neonatal Intensive Care Unit - NICU - (we will be put up in a hotel near the hospital) until he is scheduled for surgery. Baby will undergo a full 3-9 hour open heart corrective surgery where they will cut both the aorta and pulmonary arteries and re-attach them where they belong and stitch up the hole created by the balloon septostomy. After surgery he will remain in the NICU until he is stabilized (they say usually 2-3 weeks) at which point he will be flown back to the Winnipeg NICU on the med-evac (we will again travel back on a regular commercial flight) until he is cleared to come home. This could be a few days or a few weeks.
I've come to a point where I'm able to talk about TGA, but seeing pictures and videos of it is still hard. Truthfully, I can't handle more than about 10 seconds before I lose it. But there is a really great, and very succinct, video series from the Children's Hospital of Philadelphia that gives you a clear idea of the whole process which I'll post bellow along with some information links.
And despite the situation there are some positives to keep in mind. The corrective surgery has a 95-98% success rate! That's huge! Plus we're going into this knowing in advance what (for the most part) is wrong which gives us time to mentally prepare for our baby's rough start. And, presuming TGA is the only thing wrong and the surgery goes well, there should be no long term effects on our baby's physical or mental development. Provided there are no other complications, he will be able to live a normal, active life without any delays. We will still need to take him for yearly checkups which he will have to continue for his entire life, but that is only to check in.
There is still however the chance that our baby could have another condition or genomic abnormality (there is a heightened risk of Down syndrome) that is currently only presented in the heart. We won't know for sure until we get to actually meet him and have the genetic testing done. And the thought of something else being wrong does nag at the back of my mind so I'd be lying if I wasn't a little worried. But I trust that God will give us the strength to handle whatever the situation may be and we are so blessed to have an incredible support system of family and friends who helping us through everything.