Congenital Heart Problems
Yes, it can happen to anyone. We discovered that it can happen to us also. Our newborn son was diagnosed with Transposition of the Great Arteries and ASD and VSD. That latter two meant that he had multiple holes in his heart. So, we have been on an emotional roller coaster the last week and a half. Below is an email I sent out to my co-workers to explain our ordeal:
Two Thursdays ago I had to take off because my youngest son (at the time) was sick with a virus. I tried to take care of him so my wife (who was pregnant at the time) would not get sick. He got over and none of us ended up getting sick, which is wonderful considering the week we had ahead of us. Friday I took off to be at the hospital for the birth of our 4th child. My wife was to be induced on the morning of the 27th around 6:00AM. Everything started well, and even a little earlier than expected that Friday. Amy felt fine throughout labor and really had one of the best deliveries yet. She was very excited that our last (we shut the factory down) was so easy.
After the baby was born, he went down to the nursery for the normal checkup, weighing, etc. There were issues at this time. Everything seemed to be normal. The baby even went through the circumcision which we later found out would not have normally been done if they had known of the heart problem due to stress. After a day in the hospital, and several visitors, everything seemed to be going well. I had gone downstairs to get some supper and when I returned, there was a doctor explaining things to Amy. I overheard one word, surgery. After the doctors left Amy went back over everything that had been told to her. She said that the baby had a heart defect that had been detected as a heart murmur (we were aware of the murmur previously) and proven to be an issue. A lot of babies have heart murmurs at young ages that eventually stop. This one however caused a flag to be raised by our pediatrician and tests to be done to determine the cause. The Echocardiograms showed that the baby had TGA (Transposition of the Great Arteries). His Aorta and Pulmonary arteries were switched. Everyone’s heart starts out this way and eventually corrects itself before birth. For some reason this did not happen with our baby.
We were told that the baby would have to immediately be transported to UAB where a heart surgeon would perform the switch operation that was required. We were told that some things were working in our favor as there was an umbilical artery that normally would have closed up after birth that was open and functioning to ensure that the baby was getting oxygenated blood. This was also another sign that there was a problem since it should have been closed. They gave the baby some medicine to keep this artery opened. There was a chance that this medicine could cause the baby to have breathing problems, but this did not happen. At 7:30PM Saturday the ambulance from UAB took Aaron up to UAB and got him in the RNICU (Regional Neonatal Intensive Care Unit). We followed behind in our van and met them there because we were not allowed to ride in the ambulance which made momma very nervous. When we got to the NICU, the baby was surrounded by a group of doctors. My father-in-law referred to one of them as a nurse and was quickly corrected. Two of the doctors took us out of the room to explain the situation to us.
Supposedly this is something that UAB sees around 12 – 15 times a year. The surgeon is very familiar with this operation and was schooled in South Africa and the US. The doctors told us that other than the switched arteries, there were more issues at hand. The baby had three holes in his heart. One hole was in the Atria (top chambers of the heart) and was known as an Atrial Septal Defect. The other two holes were in the Ventrical chambers in the lower part of the heart and this defect was known as Ventricular Septal Defect. These were congential (present at birth) heart defects. So, the doctor did not know at the time if the 3 holes would be repaired during the surgery. That would have to be decided once inside. Sunday was a dry day for news. The baby sat in the NICU and we stayed in a waiting room to hear news. We heard nothing until late in the evening when the doctor came by. The surgery was set for Monday at that time and other surgeries were moved. We were told by the doctor that the holes in the heart were actually good. This allowed oxygenated blood to flow where it was needed since the heart was not working correctly. He told us that they sometimes have to go in and put a hole in others to allow this flow. So, he told us that our baby came prepared for this surgery.
Monday morning was wild for us as the surgery was early in the morning. Our Family and friends took up about a third of the Cardiovascular Intensive Care Unit waiting room which was quite large. I have a picture of everyone sitting together and it is amazing how many came. Our church staff, family from out of town, and friends from Prattville all came to be there. Half way through the surgery, the doctor sent someone out to tell us that the baby was off the bypass. This was a good sign because we knew that his heart was pumping again. We were told that due to swelling they might not close the incision on the day of surgery. However, they did. Within a few hours, we were able to go back and see the baby. He looked rough and was lifeless on drugs. He would be in this condition for a day. He stayed on pain killers and sedatives for a couple of days and they slowly decreased the dosage. Towards the end of the week, we were sent to an actual hospital room where we cared for the baby ourselves. He was on no pain medicine or any other meds the last two days we were in the hospital. We were told by hospital staff that this was very good and that children were normally sent home with a prescription for pain medicine. When we were released Friday evening, we were given no prescription and a clean bill of health. The baby will remain a heart patient and will need regular check ups, but he is cleared to play any sports, when the time comes, and the doctors could not even find the holes in his heart on the day we left. There is a small remnant of the hole in the Atria, but it is closing well. So, all in all, things are well.
Everything really is good here at the house. The baby is doing exceptionally well and we are so happy. He has a scar on his chest and a couple of places on his stomach where there are stitches remaining. Just know that this can happen to anyone. Give blood. Be thankful for what you have.
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Thats an amazingly emotional story. From one father to another, I hope everything continues to go well for you and your family.
Thanks for sharing.
Congratulations on your baby boy and on his successful repair! I also have a son who was born with TGA; he will be one year old next week. Your experience sounds similar to ours; how lucky are we to still have our babies?