( I accidentally published this post before it was finished. Here is the completed post.)
When I was 20 weeks pregnant Ryan, Cameron and I headed to my doctor’s appointment to find out the sex of the baby! We were all so excited. I secretly wanted another boy because quite honestly I am not sure if I can handle a mini me..LOL! The 20 week scan is an important ultrasound because you are halfway through your pregnancy and most major organs should be fully devloped an added bonus is finding out the sex of your baby! The sonographer announced ‘It’s a Boy!’ and we all squealed with delight especially Cameron. The sonographer continued to measure the baby’s head and look at all other organs including head, spine, kidneys, stomach, heart, etc. When she got to the heart she said that she wasn’t able to see it very well and to scheduled me to come back in a week or so. Evan was doing somersaults at the time so I thought nothing of it as we left the appointment. I showed up at the follow up appointment for them to get a good look at the baby’s heart. It was a Thursday and Ryan was working in Ohio at the time. Cameron really wanted to see where Ryan was working and staying during the week so I had the following day off and after my appointment I was going to pick Cameron up and we were going to make the 2 hour drive to Ohio. The sonographer started and when she got to his heart I could sense something was different and after several minutes she announced that the baby appeared to have a hole in his heart. She couldn’t tell by the level 1 sonogram how big the hole was or how severe the problem was but that there was something going on and they scheduled me to have a level 2 sonogram. In hindsight, I believe that during our 20 week scan the sonographer saw the same but since Cameron was there and we were so happy she didn’t want to steal our joy in that moment. I was in shock but didn’t fully allow myself to drown in the news because there was still a chance that the level 2 sonograph showed something different so Cameron and I traveled to Ohio and we had a very restful and fun couple of days. It was such a nice distraction that came in the nick of time.
Fast forward to the level 2 sonogram. The level 2 sonogram gives a much more detailed picture it is is almost like getting echocardiogram of the heart while in the womb. They are able to examine the structure of the heart and the blood flow in more detail. The sonographer did the first exam and after she was done the doctor came in and looked to. Our baby would be born with a hole in his heart and Evan was diagnosed with Tetrology of Fallot (TOF) which is a combination of several heart defects and would require several surgeries including one immediately following birth. As long as he was in the womb he was fine so there was no reason to change our course of action during the pregnancy but we needed to be prepared for when he was born. I didn’t hear too much of what the doctor said because I was too busy crying. Ryan put on a brave face and listened to the doctor and reminded me to take it one day at a time and not get too far ahead of myself with ‘what if’s.’ I couldn’t imagine that my precious baby would need open heart surgery very soon after birth. The silver lining was that defect was curable so while we would be beginning a journey I saw a light at the end of the tunnel. I came home and immediately went to Target (strange, huh?) I needed a new binder and notebook. I am a lover of office supplies and I needed a place to write down all of my information and learn everything I could about Tetrology of Fallot so that I was prepared for upcoming appointments and because I didn’t really hear anything the doctor said. We were referred to a cardiologist who would see me several times during the pregnancy and would continue as Evan’s cardiologist once he was born. Also, during this appointment we were told there was a 1 in 3 chance that Evan would be born with Down Syndrome and the doctor urged us to take a genetic test called materniT21 which is a prenatal test that detects chromosomal abnormalities. The test is fairly new and is a non-invasive test that is simply a blood test. They also recommended I do an amniocentesis test. The Maternit21 was somehwere around 98.9% accurate but the amniocentesis was the only way to know for sure what did not come without risks. I agreed to do the maternit21 test but just for the sake of knowing so that we were prepared once the baby was born. Ryan and I knew that no matter what we would love and raise this baby unconditionally. The test results would take over 2 weeks and those were two very long weeks. I didn’t personally know anyone with down syndrome and what I did know seemed to be negative. I mean when the doctor told us there was a possibility of T21 he said in such a way that made me feel like this was bad. Over the weekend I learned all I could about TOF in preparation for our upcoming apppointment. I was armed with questions and information. The diagnosis of the TOF became somewhat less scary the more I prayed about it and learned about it because there was a solution. The solution was open heart surgery but the surgerical procedure was very successful. The T21 was in the back of my mind and somewhat scary because this wasn’t something that could not be surgically fixed and now knowing what I know now I am thankful for that.
Ryan and I went to our first cardiology appointment where the cardiologist would explain the defect in more detail and let us know what to expect once Evan was born. We had been told by the sonographer to not be afraid at the cardiology appointment if the cardiologist doesn’t talk to us. She said that she would not talk during the echo but afterwards would explain everything. I kept quiet but Ryan tried to ask a couple which she didn’t answer until the end. Not in a rude way but you could tell he need to focus on what she was seeing in the screen. Those appointments were not comfortable at all for me. She would press very firmly on my stomach in order to get good pictures. The first thing she said is he does not have Tetrology of Fallot instead he has atrioventricular septal defect which is one of the defects within TOF. The good news was if you had to have a heart defect and could choose between the two the AVSD is the ‘better’ of the two because you typically only require one surgery to repair as opposed to two. The other news was that it was even more likely that Evan would be born with T21. Atrioventricular defect is commonly associated with T21. Approximately 45% of children with T21 have a congenital heart defect and of this approximately 30 percent have AVSD. We were scared but I kept telling myself that he would be fine and to wait until I got the results instead of worrying every day up until then.
About two weeks later, Ryan was about to take Cameron to school when I got the call from the geneticist with the results of the materniti21 test. She started with “I’m sorry, but your test showed that your baby has Down Syndrome.’ I didn’t hear much after that and I just wanted to get off the phone. I politely asked her if I could call her back. I held it together because Cameron was there and ask Ryan to come back home after he dropped Cameron off. As soon as the car pulled out the driveway I remember crying uncontrollably and asking ‘God why.’ I was devastated and didn’t know why. At the time I thought the idea of having a perfect baby were shattered ( I realize how wrong I was.) Ryan came home and I am sure he already knew what I was going to say. I could hardly stand but he was a pillar of strength. It just happened to be month end closing and it was my second month ever doing the month end close process and if you know need to know anything about closing is you have a deadline and there are a lot of moving pieces. If I didn’t complete my process in time than I would be holding someone else up. Again, in hindsight I see what a blessing this was. I went back to work and that afternoon I called the genetist back and she during our conversation she said something like ‘ no test can predict what any child’s future’ and in that moment a light when off and in that moment I realized that Evan was still perfect and there was no way I would allow a diagnosis define who he was or who he would become and I would not allow him to steal the joy from this pregnancy. So what did I do? You guessed I went to my binder and threw out everyting related to TOF learned everything I could about AVSD and added a section for Trisomy 21! We were put in contact with the Down Syndrome Association of Pittsburgh who provided very valuable information in preparing for a baby with T21 the more I learned the more excited I became. Like I said, I didn’t know anyone with Trisomy 21 and perception was that of many years ago. The reason why I always use Trisomy 21 is because I feel like there are so many negativivity associated with Down Syndrome.
It took me some time to tell people. There were a couple of people I told right away including my mom, my cousin and a very close friend. It wasn’t because I was embarassed but because (this is going to sound silly) but because I didn’t want to disappoint anyone. I wanted everyone to LOVE him and not define him by his diagnosis. I didn’t want people to feel sorry for me in any way in regards to his heart because in my heart I knew that he could be ok and we would get it. I had embraced our situation and wasn’t looking back and wasn’t sure if others would be able to do the same. I immersed myself in my faith, prayer and scriptures. The scripture reminded me that I was not in this alone and that Evan would be perfectly created in his image. I realized that I was afraid because the diagnosis did fit the vision I had created in my mind. I hadn’t envisioned heart surgeries or him having Trisomy 21 and at the same time I realized that my visions are not always God’s vision and that God’s is so much more than I could imagine and as long as I put my complete and total faith in Him I would be ok so that I what I have done. . I realized that no one could predict anyone’s intellectual ability T21 or not and that every child comes with challenges and being a parent is the one of the toughest jobs in the world and also the most rewarding. It’s funny because as I began to tell people I felt like I had to protect them. I didn’t want them to have those same initial feelings that I had so I was very deliberate in the way I shared the news. Like I said, I wanted everyone to LOVE and accept him for who he was and didn’t want an ounce of sadness. I still had a couple of people say “I’m so sorry” which is a natural response when you are not quite sure what to say but I always assured them there is nothing to be sorry about. We are blessed and highly favored. The bottom line is I was having a baby and couldn’t wait to meet him!