When I was just 16 weeks pregnant they told me Baby B (Levi) had what they thought was heterotaxy where his heart and stomach were on the opposite sides of where they should be. I was referred to Children's to get fetal echos done every 6 weeks until birth. They actually found out he had dextrocardia instead. (His heart faces the right side of his chest). At 23 weeks I was told Baby B now had reverse blood flow and selective fetal growth restriction. He was measuring smaller than Baby A. I was advised to go out of state to terminate Baby B that way I could save Baby A. They said if I did nothing, Baby B would most likely pass in the womb and then Baby A could have a stroke and potentially also pass (since they shared the same placenta and amniotic sac). They said if he survived to my scheduled c-section, he most likely wouldn't survive his first open-heart surgery after being delivered. Very heartbreaking to be told this. I took "last" ultrasound videos with permission in case something happened. And I cried during the whole appointment. We did nothing that they recommended. And wouldn't you know it, our next ultrasound his blood flow went back to normal. When I was 27+6 (the Friday before I was supposed to be admitted, both of their brains were showing extra fluid. So that led me to an earlier admission). A few heart decels kept happening before I made it to 32 weeks which led to a round of magnesium and two days of everyone freaking out thinking I needed an emergency c-section. But because of my Lovenox shots (since I was bedridden in the hospital bed 24/7), I wouldn't have been able to be put under. Lots of back and forth happened, but they made it to 32+5 which was when I had my scheduled c-section. Baby B (became Baby A during my c-section) was 3 pounds 4 ounces and Baby A (Lane) was 4 pounds 7 ounces. Levi came out blue and wasn't crying, but began to in the resuscitation room. Lane came out crying which made me cry happy tears after panicking and asking why Levi wasn't crying. The plan was for Levi to come to my postpartum room at UC before going to Children's. He was emergently transferred to Children's and had to be bagged because he wasn't breathing right away so I didn't get to see him except for the few seconds in the operating room to take a picture. They did an echo on him once he got to Children's and we discovered he had Dextrocardia, Transposition of the Great Arteries, a few VSDs, pulmonary stenosis, and superior-inferior ventricles. He spent 102 days in the CICU/step-down units. He's had 2 open-heart surgeries and 1 cath procedure thus far. After his second OHS he came off home oxygen. He is THRIVING now! He has a feeding tube still but gets therapies to work on eventually removing that.
Lane was diagnosed a few days before their first birthday with an idiopathic 2:1 heart block (AV Block). I discovered this because my spidey-senses were tingling. (Lol). The boys had fevers and two different rashes (what we thought was hand-foot-mouth, but wasn't). I decided to check both of their vitals and Lane's heart rate was only 57. When it normally was around 130. I called the nurse line from our pediatrician's office and she said maybe it was a fluke. But if I felt better I could take him to the ER. We ended up taking him to Children's Liberty campus on a Monday night around 10pm. The ER doctor said it was HFM and it got into his bone marrow causing it to slow down his heart. They decided to admit him there overnight since his heart rate dropped to 45 while he was sleeping. They started him on fluids and an antibiotic. The admitting doctor started asking me about the meds I'm on. I have tachycardia and take medication to slow my heart. He sort of accused me and said he probably got one of my pills and that in a few hours his heart rate should go back up. They called the cardiology team at base since they don't have one at Liberty. They disagreed and the next day Lane got transferred via ambulance to base to be admitted for further testing. It was determined he has an idiopathic 2:1 heart block (AV block). He may need a pacemaker as he gets older, if he starts showing symptoms, or if his heart rate gets lower.
Neither are genetic disorders. They both see cardiology and Lane sees electrophysiology; both through Children's.
It's been a rough journey, but our boys are alive and healthy despite what some of the doctors told me. Miracles DO happen! A huge thank you to our team at Cincinnati Children's, The Heart Institute, and the Heart Mini / AHA!
