Our Little Guy's Heart

When Colin and I started talking about having another child we were sooo excited at the thought of adding another little one to our family. Our only concern (other than ALL of the other concerns that come along with having children!!) was having another child with a heart defect because Abigail's heart defect is genetic. We talked to several doctors and were informed that while we had an increased risk of having another child with a heart defect, it was only a 3-5% chance.

When we found out that we were expecting another child, we were completely overjoyed. Of course the fear of our second child having a heart defect loomed, but mostly we were ecstatic and over the moon about our little bundle of joy. Just to be sure, we immediately talked spoke to all of our doctors, including our cardiologist who told us to come in between 18-20 weeks for a fetal echocardiogram. 

About 6 weeks ago, we had our first fetal echo. Everything looked great. Very promising. The only area of  our baby's heart that our cardiologist could not see was the area where Abigail had her defect (of course!! Isn't that always how it works?!?), but we left feeling good and reassured. He told us to come back in 4 weeks so that he could check our baby's heart again.

The following week we had our 20 week anatomy ultrasound. Everything was going great. The technician said that everything looked very textbook and then she got to the heart. She was spending a lot of time looking and finally we asked if everything looked normal. She explained that the atrial septum is like a door that opens and closes and she just can't tell if it's closing all of the way. Colin and I looked at each other and our stomachs dropped. The technician said she was going to show the pictures to the doctor and then would be right back. As soon as the tech left, we both hugged each other. We knew.

About 10 very long minutes later, the doctor came in and asked to rescan me herself. All of a sudden she stopped, looked at us and said in a very matter of fact voice "Your son has ASD." We lost it. We just could not believe it. How could this happen?? And twice?? The thought of having to go through everything again is/was agonizing.

We called Abigail's cardiologist as soon as we got home. He was just as shocked as we were. He tried to reassure us the best he could. Our next appointment was not for another 3 weeks, so all we could do was pray and wait.

At the end of October, we went in for another fetal echocardiogram. Needless to say, we were very nervous. The echo seemed to take forever. After it was done, our cardiologist took us in another room. He very sadly told us the news. Our little guy has an Atrial Septal Defect (ASD). He has a primum ASD (there are 3 types), which is the same type that Abigail has. He also has a Ventricular Septal Defect (VSD). Abigail also has a VSD, but it is very small. At this time, they believe the VSD our little guy has is small too, but it is hard to tell for sure. Our cardiologist is also unsure of which, if any, valves are also affected. In many cases of primum ASD, other valves can be affected due to the location of the hole. For Abigail, she had a tear in her Mitral Valve that needed repair. Obviously going into this appointment we knew that it would most likely be confirmed that our little guy has an ASD, but we held out hope that we would hear differently. Unfortunately that is not the case. We definitely were not prepared for finding that he also has a VSD.  Our cardiologist went over in great detail what all of this means and what treatment we are looking at in the future.

Our sweet little guy will need to have open heart surgery anytime from when he is born til just over a year. Most likely it will be between 4 months to 15 months of age, depending on his condition and the size of the VSD.

Colin and I have been through various stages of grief, from shock, to denial, to devastation and I think now, acceptance. There are so many things in life that are out of our control. We can ask why and how (which we have done numerous times) but it still doesn't change our situation. Do we wish that our sweet children did not have these defects and have to endure the emotional and physical pain of open heart surgery? Absolutely. If Colin and I could change that for them, we would in a heart beat. But for reasons unknown, God has chosen us to have these two absolutely precious children that also have heart defects. All Colin and I can do is pray and love our kids with everything that we have. We will do anything and everything to make sure that they have whatever they need, which includes the absolute best medical care. We are so lucky have a team of doctors and nurses that love and care for us and our kids. Many people do not have that so we are truly thankful. Most importantly, we have a strong faith in God and a wonderful support system filled with family and friends.

Colin and I have no doubt that our little guy is a fighter just like his sister, Abigail. When we had our last echo, our cardiologist commented that we were going to have our hands full because he was all over the place! He's a squirmy wormy, just like our Abadabs!

This has been a very difficult time for us. We are so filled with joy to be welcoming our little boy into the world, but we are also scared for what's to come. Thank you so much to everyone for all of the kindness and support you have given to us throughout all of this. We ask for your continued prayers.