News on el corazon

Friday was our 26-week ultrasound/echocardiogram and after waiting what seemed like forever for this news, we finally found out what is wrong with our baby's heart. Our little peanut has something called Tetralogy of Fallot (TOF), which is one name for a combination of four different heart defects. One of the defects, the most serious one, is called Pulmonary Atresia, which means that the heart was formed without a pulmonary valve (the valve that pumps blood to and from the lungs). Within the first week of the baby's life, he will need to have open heart surgery to put in a shunt that mimics the function of a pulmonary valve. Without this, he wouldn't survive past the first few days of life. This first surgery will be the most risky since the baby is so small and new to the world. We need to do everything we can to make sure he is born a big, healthy baby so he has the best chance of survival through Surgery #1. Luckily, we live in the same city as a very good Children's Hospital and the surgeons there do approximately 80-90 of this same surgery per year, so this is reassuring. The doctor told us that the odds are in our favor that the baby will come out of this surgery without something major happening....as long as he is born big and healthy.

At about 4-6 months of age, the baby will need to have another surgery where they remove the shunt and put in an artificial pulmonary valve. They will also repair the hole in the wall of the heart at this time, which is another one of the defects. This surgery has even better odds of being a success because the baby will weigh more and will have a better immune system. In an ideal world, this surgery will be considered the "complete repair."

BUT.....since our baby has the most serious kind of TOF (with no pulmonary valve, as opposed to a partial or narrowed valve), any "fake" valve they put in to mimic the real thing is not real body tissue, so is not going to grow with the baby. By the time he reaches the age of about 5, his heart will be bigger but the fake valve will be the same size it was when they put it in, so they will need to go in and replace it with a bigger one. Then they will have to repeat that at about age 20 and probably again later in adulthood. All of this is best case scenario, assuming no other major complications take place. Replaced (fake) valves can become "leaky" and can cause more trouble and more surgeries and may need more attention. The most important thing is that we continue with good cardiac care for the rest of our son's life.

This shouldn't limit his life much. He should be able to run around just as much as other kids and lead a normal life, as long as both surgeries go as planned. This is pretty overwhelming news, as no one wants this for their baby, but we are grateful for knowing what to expect beforehand. I can't imagine having to process all of this in about 5 minutes, after the baby is born, as many parents must do. We are taking things one step at a time. Our first step is to make sure the baby isn't premature and is born as big as can be. Our next step will be to get through the first delicate surgery, and so on....

Why this has happened we do not know. Sometimes genetics play a factor, but sometimes it's just a fluke....so I guess we just figure we're one of the chosen ones! Only ~2 in 10,000 babies are born with this disorder.

PLEASE keep Baby Porta in your prayers. We have another ultrasound in 8 weeks to see if anything has changed, and we would be so happy if there were slightly better news by then (like if the pulmonary valve were at least partially formed instead of non-existent). Dan and I are so grateful for all of the good energy and prayers that have been sent in our baby's direction in the past few weeks. Baby is so special to us and we are so excited to meet his sweetness. We would not change a single thing about him!!

We will keep you all posted.
Love, Megan & Dan