Persevere (verb): to persist in anything undertaken; maintain a purpose in spite of difficulty, obstacles, or discouragements; continue steadfastly
The day had come when we were scheduled to see the pediatric cardiologist. My husband and I weren’t overly concerned because my OB had said she wasn’t too concerned because everything else looked great. We checked in and waited to be called back.
The tech came out and asked us to go into the room to have our baby’s heart scanned. He needed to use 3 different wands for different images. Baby girl was, yet again, in a horrible position (at this point I was convinced she was going to be born that way). Her rib cage was casting shadows over certain areas of the heart – areas that we were missing originally and really needed to see.
The cardiologist came in and attempted to help. She had me turn on my side while she got on top of me and reached over – any technique she could think of, she did. Finally they decided they were just going to take difference pieces at a time instead of “whole” images and piece them together later. The whole scan took well over an hour. Afterwards, she had us go into an exam room and wait while she looked over all the images.
I sat there and told my husband there was no way it was good. Something was wrong. It was too difficult for the cardiologist OR the tech to get the images and they didn’t say much during the exam. I just knew something had to be wrong.
Oh how I wished I was wrong
The cardiologist came in and immediately said something was wrong and it wasn’t good. She told us it looked like our baby had something called Double Outlet Right Ventricle (DORV). It’s a rare congenital heart defect and no one knows how it happens – it just does. In a normal heart, the aorta connects to the left ventricle and the pulmonary artery is connected to the right ventricle. In this case, both arteries flow out into the right ventricle (nothing to the left). This is a problem because the right ventricle carries oxygen-poor blood. Aside from that, she said the baby also had a ventricular septal defect, the left ventricle was very small – smaller than it should be, and she believed there to be some pulmonary stenosis (obstruction of blood flow from the right ventricle to the pulmonary artery).
She told us that this would require surgery anywhere from immediately to 3 months after birth and it was very critical for us to keep the baby inside me for as long as possible. She was perfectly safe and unaffected by her DORV while she was inside because because my heart was pumping the blood through her system for her – her heart was just going through the motions. Once she was born, her heart and lungs would do the work and she did NOT want this baby born early because the earlier, the much smaller and more difficult the heart would be to work on. She also made it clear that I would need to come in every few weeks for appointments and check ups so she knew what kind of “crew” and equipment she would need when the baby was born so her and her team would be ready.
She looked and me and I couldn’t look at her or say anything. I just blankly stared at the drawing she sketched for us of what the baby’s heart looked like. My husband asked her how confident she was in her assessment and she responded with “75%”. We asked her if she could give us a minute and she left the room. I sobbed. It was so incredibly heartbreaking to hear that my baby was not okay and there was nothing I could do to fix it.
When we left and got in our car, I again, balled my eyes out. I had my husband call my mom because I couldn’t. After telling my mom the news and how it would require surgery, he handed the phone to me. She was choking back tears as she said how sorry she was to me (this was her first grandchild after all). She then told me to go see a specialist in an area that handles these types of issues on a regular basis. Our city didn’t even have a pediatric cardiology surgeon. While I was on the phone with her, my husband looking up the best places to go for baby’s with heart defects.
After I got off the phone with my mom, my husband told me about Texas Children’s in Houston. It was the #1 hospital in the NATION for Pediatric Cardiology. Thankfully, Houston is only a couple hours away. He told me to ask my OB for a referral over there. I called up my OB and left a message telling her the news we got and asked for a referral to Texas Children’s Hospital. I never got a call back from my OB after that, but I had an appointment a week later with her and would discuss it more with her then.