While on vacation, I got a phone call to schedule another ultrasound at the hospital. The only day they could do it in the month of May was on the 12th which happens to be my birthday. So it was either that day, or drive to another city to get it done so I reluctantly chose May 12th. The day of the appointment arrived and although I had been gearing myself up for the worst, I was holding a glimmer of hope that everything would be just fine. The technician did her thing and was looking at the heart. I was intently watching the screen and when the picture came up that showed all four chambers, my heart sank. One of the chambers was still a lot small than the rest. The high risk doctor pulled us into a little room and told us that Alyson had Hypoplastic Right Heart Syndrome and tried to explain what it was. He might have told us other diagnoses with her heart but from that moment on I felt like I was in a trance. I asked him on a scale 1-10 with 10 being the worst how bad this is. He told me he would give it a 7. My heart sank lower and I sat and bawled over this news. He also mentioned (maybe because he had to tell me all options?) that termination of the pregnancy is an option for us if we wanted to do that. When we left the hospital, Frank and I ordered takeout and went home to eat. I felt like I had to choke down the food because I was just so upset about everything and we both cried over our food in silence. It was one of the worst lows in my life and I know for Frank it was one too.
May 21, 2008 we went down to PCMC to have an echocardiogram done on Alyson's heart to get an official diagnoses on all that was wrong. I went there prepared with a list of questions I had thought of during that week to ask about her condition and how it would affect her and why she had a heart defect. When we were sat in the consult room, it was again confirmed she had Hypoplastic Right Heart Syndrome….then more defects were being read and explained. When I thought they were done, they would tell us another defect and I felt this horrible gut wrenching sadness. I asked the cardiologist what could have all of this and what I possibly did wrong. My memory took me back to when I was 6 weeks pregnant and I had an ear infection so I was put on antibiotics. The doctor assured me it was okay to take it while I pregnant and when I told the cardiologist this, he confirmed that it was okay to have taken them. He said that even though sometimes heart defect are caused by genetics, a lot of times it just happens and there is no way to explain why. Even with that answer, I was still beating myself up inside thinking that there must have been something that I possibly did to cause my daughter this issue.
Alyson's official diagnosis was given to us as AV Canal, Ventricular Septal Defect (VSD), Transposition of the Great Arteries (D), Pulmonary Stenosis, Hypoplastic Tricuspid Valve and Hypoplastic Right Ventricle. I was feeling at that moment that the situation was hopeless and we were going to lose our baby. I was bawling and looked like a mess. The cardiologist was telling us that even though there were so many defects, they actually were all good because they all helped each other.
- Because Alyson's oxygen level should remain between 75-85% in the beginning, the Pulmonary Stenosis (narrowing of the pulmonary artery) would help to limit the amount of blood flow to her lungs so her range could be kept between those levels.
- Having Transposition of the Great Arteries means that the pulmonary artery and the aorta are reversed. The aorta in turn will then send out oxygen poor blood back out to the body when it should be oxygen rich blood. Babies that have TGA require immediate intervention when they are born to correct this because of the oxygen poor blood being pumped back out to the body. But because Alyson had AV Canal and a VSD, her oxygen poor/rich blood was mixing in between the chambers so she could have some oxygen rich blood pumped back out to her body. This would make it so she would not need a surgery when she was first born to correct that issue.
The cardiologist told us of the surgeries that Alyson would have to have and told us that even though these defects were not the best to have, they were workable and they gave us hope for our sweet baby that would be entering into the world. When we left, I felt like I understood some of the stuff that they told us but when we got in the car it seemed like I all of a sudden couldn't remember what we talked about. I called my Mom to tell her what we found out and started crying again because “there were so many things wrong”. My Mom said to me “We all fasted and prayed to be able to get answers to what was wrong and that everything would be okay. The cardiologist told you that they can work with what she has and that is great news. Our prayers were answered!” I listened to my Mom and knew she was right. I had a hard time seeing it while in that devastating moment in the cardiologist office but prayers were indeed answered.
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