And now, from the beginning (10/19 post)
We found out about our baby's heart defect just before 4th of July weekend. To say the least, it was very shocking and saddening in the beginning, but we’re hopeful and encouraged now. We came to a point where we had to stop reading everything there was to read on the internet, and just start being positive.
In early June we were at our normal ultrasound/checkup and the sonographer was having a hard time getting a clear picture of the heart. She was ‘complaining’ that the baby was moving around too much and that the baby was putting its hands in the way, etc. After our doctor spoke with this sonographer, he decided he wanted to make an appointment for us with “Maternal Fetal Medicine” at Hartford Hospital. This appointment was set up for a month later on June 30th. Essentially, this is a group of specialists in the hospital that are OB/GYNs with extra training. They are called in as a type of consultant when there is an expected risk, and they then do focused ultrasounds to detect any issues. However, at the time, we didn’t really realize any of this. We didn’t think it was too serious of a matter since we weren’t going to be seeing them for another month, and literally every test and every ultrasound had gone so well up until then. I was having a very normal and good pregnancy. Even in that appointment where they couldn’t get a clear picture of the heart, they told us so many favorable outcomes of the ultrasound and recent bloodwork…including how strong the heartbeat was. We thought that we were simply going to this maternal fetal medicine appointment to retrieve a good picture of the heart so that our doctors had it. A check in the box, if you will. Well, not so much. After a detailed ultrasound and echocardiogram, the Doctor at Maternal Fetal Medicine told us that he is ‘95% sure’ that the baby has a heart defect called Transposition of the Great Arteries. With this congenital heart defect, the two main arteries leaving the heart are transposed, or reversed. Therefore, oxygenated blood cannot and will not circulate to the body. No one will survive with this issue so a surgery at birth is necessary. (The baby is fine while in Mama’s womb.) The baby will likely turn blue due to lack of oxygen at birth, or shortly after. He spewed off 20 more minutes of information as I bawled and as Mike tried to hold it together. Thank God Mike was there to actually absorb some of the information…as he’s very knowledgeable with anatomy and biology anyway.
After this appointment we had to wait an entire week to meet with the pediatric cardiologist at the children’s hospital in Hartford, CCMC. This was the absolute longest and most difficult week of our lives. I spent every hour either researching or melting down. I came up with such a lengthy list of questions, and killed myself trying to find answers before actually talking to someone (…say a cardiologist) that would have all of the answers. From all of the information on the internet that we had read, the defect can come along with other issues and defects (both at birth and in the future). I could not stop reading, but it was so bad for me to do so. We had so many questions for the cardiologist regarding the surgery, the potential related defects or complications, issues 20 years down the road, limits to physical activity/in sports, scars, etc. I was so anxious and stressed all week before meeting with her. It was very difficult for me to take things one step at a time.
One thing we did know is that we were very lucky to know of this situation ahead of time. Our doctors will be ready when I give birth, with a cardiology team on hand. Some people don’t figure this out until their baby is born, and then they are surprised and in a scramble.
Meeting with the pediatric cardiologist for the first time left us reassured, and with hope and encouragement. We were, and still are absolutely amazed at the knowledge/skill/intelligence of all of the doctors we have seen. For about an hour, the cardiologist completed an ultrasound and echocardiogram (really focusing on the brain and the heart) and then explained every detail to us with hand-drawn color-coded pictures. She confirmed the defect, and the necessary surgery. She said that as it appears to her, there is nothing else going on…no other defects or issues coming along with this transposition that would complicate things. It was a great relief because since receiving the news from the Maternal Fetal Medicine office, over that long week before getting to meet with her, we had very slowly been coming to terms with this one transposition defect and one surgery. …But we were terrified of anything else going wrong, or receiving any further bad news. So in the end, the cardiologist appointment went as well as it could have. Our child will have cardiologist appointments regularly for its entire life, and they will be on top of any issue that may come up down the road. For example, they may need to do some rounds of angioplasty down the road to widen up some narrowing veins, etc. Since that first cardiologist visit we have met with a cardiologist every 4 weeks. The baby’s heart is closely monitored to make sure everything else is developing and growing normally, and that there are no other issues besides the transposition. This transposition issue seems isolated, which is good in a sense. We just hope it stays that way, and that nothing starts to complicate matters.
Our normal OB/GYN doctors still treated me as a “normal pregnancy” because as I’ve mentioned, everything else had gone so well. They would say "there is just one mechanical problem we have to fix once the baby arrives." However, because of the defect, the pregnancy switched to “high risk” towards the end. This means two visits to the OB/GYN office every week for non-stress tests, ultrasounds, and meetings with the doctors.
So…we’ve had a lot to think about and figure out throughout the second half of this pregnancy. This is an extremely rare defect, but as of ~25-30 years ago, they do have a solid surgical procedure for it. They really can’t find a cause for it. From what I’ve read, the defect could be the result of genetics, pregnancy over 40, a mother with diabetes, a mother with alcoholism, etc. None of which apply to us. And because the surgery is only 25-30 years old, we really don’t know too much about potential issues or necessary procedures later in the child’s life. The defect requires open heart surgery to switch the arteries, and that will take place ~48-72 hours after birth. They need to wait this long because they want everything in the baby’s body to settle, like the lungs for example. The baby will go on medication right when it’s born to make sure that the heart can distribute oxygenated blood until the surgery takes place. A balloon atrial septostomy procedure may also be necessary at birth. This procedure is a catheterization - it will enlarge a hole in the heart between the left atrium and right atrium. The catheter has a balloon attached to it and will likely enter the baby’s body through the groin. The larger hole will again improve the oxygenation of the blood until the baby undergoes the open heart surgery. After the open heart surgery, the baby will then be in the ICU for ~2 weeks, and recovering in the hospital for probably another 2 after that. Because it’s so rare, we were told by the cardiologist that our Hartford children’s hospital only does this surgery about 2-3 times per year, tops. They do many other heart surgeries on children and babies, but not this particular one. So, through the cardiologist and our own research, we were instructed to take a look at Boston Children’s. They are #1 for pediatric cardiology, and they have seen much more volume of this specific surgery. They actually designed and perfected this specific surgery 25-30 years ago.
We first went to Boston in the first week of September, and then again the second week of October for our last echocardiogram before delivery. We met with the cardiologists at Boston Children’s and the OB/GYNs at Brigham & Women’s. We also toured the Cardiac ICU (CICU) at Boston Children’s, and saw the setup for our baby post-surgery. Boston Children’s doesn’t deliver babies, so we will deliver at Brigham & Women’s, and then do the surgery with the cardiac surgeons at Boston Children’s. The two hospitals are attached with a walking bridge. There was no new news that arose out of our visits to Boston. The doctors see the same issue. We will head up to Boston at about 38 weeks pregnant and stay there until the baby is ready to come home. We’re arranging it this way because they obviously don’t want me to go into labor early, and have to worry about getting all the way to Boston. We also decided that I will be induced on November 1st, 5 days prior to my due date. The hospital offers family housing (think Ronald McDonald House) which costs $30/night…much better than the Boston hotels they listed for us! The family housing will be our cheap Boston apartment for the potential 5+ weeks there!
