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I couldn't stop throwing up. That's the reason I went to the doctor. I thought I had the flu. So when the nurse walked into the exam room and said, "You're pregnant," I was like, "Ha, you have the wrong room. I didn't even take a pregnancy test." But she said, "Remember when you peed in the cup? That was a pregnancy test."
I just stared at her and then started sobbing. I wasn't supposed to get pregnant, ever! My doctors had told me long ago that having a baby could kill me. I was born with a bad heart. It had a big hole in it, for one thing, and was malformed, too (the chambers were flip-flopped). Most babies born with a heart like mine don't live very long. When I was a kid in Carrollton, Texas, I had three major surgeries to try to repair the problems and, each time, the doctors weren't sure I would make it.
My parents always tried to treat me like a normal kid, but I knew I was different. I couldn't run around and play like my friends. My body never got enough oxygen so I didn't have much energy. And I was often recovering from surgery so I had to be super-careful not to fall down or get hit in the chest. My classmates understood. But when I was in fourth grade we moved to Idaho and some of the kids teased me because all I could do in PE class was stand around and hold the stopwatch. I hated it. But if I ran, I could black out and would have to go to the ER.
Somehow I got through my teen years and went to college. After I graduated I landed a great job at Give Kids The World, a nonprofit for children with life-threatening illnesses. I had surgery at 24 to install an artificial heart valve and a pacemaker, and that gave me more energy than I'd ever had. I no longer felt winded walking up the stairs and I could exercise for the first time in my life. I was thrilled to be able to walk for miles on a treadmill.
Getting into a serious relationship was tricky, though. When is the right time to tell a guy that you can never have a baby? I always assumed I could adopt, but to some men I dated that was a deal breaker: They wanted their "own" kids. When I was 26 I met David, a sweet, thoughtful software engineer, and fell in love. At first he wasn't sure he could handle my heart condition. The idea of how fragile I was scared him so much that we broke up for a while. But eventually he decided that he loved me too much to let fear ruin what we had together. So we got engaged.
Since my heart was stronger than it had ever been, we went to see my cardiologist, Richard Krasuski, MD, director of the Adult Congenital Heart Disease Center at the Cleveland Clinic, and asked if maybe I could get pregnant after all. He said it would be extremely risky for me and the baby, and the blood thinner I had to take could cause devastating birth defects. That was enough for us to say, okay, we're not doing it. We were always careful about birth control.Weighing the Risks
When the nurse delivered the shocking news, I remember saying through my tears, "I don't know who I should tell first, my fiance or my cardiologist." When I told David, he looked at me, laughed and said, "At least we know we both work." That is just like him. I have a tendency to turn into a big stress ball, but David is quick to make a joke or say something reassuring. "You're going to be okay. We'll figure this out," he said.
The next week, though, was difficult. We had doctor appointments every day -- with my high-risk obstetrician, Fadi Khoury, MD, at the Cleveland Clinic on Monday, a geneticist on Tuesday to discuss the risk of the baby inheriting my heart condition, Dr. Krasuski on Wednesday (who was surprised but also reassuring), and back to my OB on Thursday.
David and I agreed that if any of my doctors said that my life was in jeopardy, it was not worth going through with the pregnancy. But the first thing the sonographer at the OB's office did was listen for the baby's heartbeat. As soon as I heard it, I started bawling. I'm not an emotional person. I don't cry at movies. But hearing that changed everything. It was a beautiful, normal heartbeat -- not like mine. I said, "We have to have this baby." But then Dr. Khoury came in and said he thought it was a bad idea. We went home devastated.
Dr. Krasuski had better news. He said that with the pacemaker, my heart was probably strong enough, but he warned that the pregnancy could weaken my heart and affect my health for the rest of my life. Plus there was still a risk that the blood thinners would cause birth defects. I asked him what he did for other heart patients in this situation. He said they either didn't survive this long or didn't get pregnant. Turns out I was one of the most complicated cases he'd ever seen. But my doctors suggested a plan that they thought would work. I could alternate between two different blood thinners at different times during the trimesters -- one that was safer while the baby was forming internal organs, and another that was more effective at preventing clots. Dr. Krasuski and Dr. Khoury talked through the plan together and then we decided: We were going to have this baby.Fear and Major Morning Sickness
One of the scariest parts was telling my parents. They were horrified. They had been fighting for my life since I was a baby and they knew how risky pregnancy would be. They fired questions at me nonstop. I also wasn't at all prepared for how difficult pregnancy itself would be. I had terrible morning sickness and could barely keep food down. I had sciatica and my pubic bone separated -- um, yes, that was really painful! I wasn't allowed to exercise. And I was exhausted. On top of all that, David had to inject the blood thinner in my stomach twice a day. He hated doing something that he knew hurt me, and my belly was covered with so many bruises I looked like a leopard.
In the middle of it all, David and I got married. Our original wedding date was right around the due date, but I wanted to get married before I got too big. A week later, at five months, I had a full ultrasound. My worst fear was not that I would die but that my baby would be deformed from the meds I'd been taking before I knew I was pregnant. But everything looked normal. And finally, we could see that the baby's heart was not defective or malformed like mine, but looked like David's: It was perfect.Special Delivery
My water broke four weeks early, right after I had gotten a shot of the blood thinner. I just stood there, scared and in shock, while David calmly called the doctor. When we arrived at the hospital, they wanted me not to have the baby for at least 24 hours to allow the blood thinner to clear my system. Luckily my labor was progressing slowly. I couldn't get an epidural, either, because if you're on a blood thinner, there's a risk of blood collecting in the epidural space, which can compress the spinal cord and cause paralysis. At the beginning of labor I was thinking, gee, contractions aren't so bad after all. Ten hours later, I felt like I was going to die. My doctors were worried that the contractions and pain would put too much stress on my heart, so even though it hadn't been 24 hours since my shot of blood thinner, we decided to go ahead with a C-section.
I found out later that my delivery was stressful for the doctors, who worried about the bleeding and whether my heart could handle the drastic fluid changes that happen during delivery. But the surgery went off without complications. I was holding our new son, Will, 35 minutes later, but I was really groggy and had to be rushed to the intensive care unit as a precaution, while Will went to the neonatal ICU. I didn't get to see him again until 36 hours later, when I was well enough to leave my room. He was perfect. I couldn't stop smiling, and David couldn't quit kissing us both.
I remember sitting around last Christmas saying, "How were we lucky enough to have this kid?" Being parents is so far from the reality we expected that it still feels surreal to David and me. It's hard to believe my easygoing and relaxed son had such a dramatic entry into the world. Our life together really is a miracle.
Deya and David Justice live in Berea, Ohio. She takes Pilates classes and does her best to keep up with her very active 1-1/2-year-old.
Cardiologist Richard Krasuski
Just 30 or 40 years ago, patients like Deya wouldn't make it past childhood. Now there are more than a million adults in the United States living with heart defects. Almost daily I have a conversation with one of my heart patients about pregnancy. But Deya's situation was definitely the most complex -- a 9 on a scale of 1 to 10. Her heart valve could have caused clotting, she could have had heavy bleeding because of the blood thinners, and she was at risk for heart failure. She had a very real chance of dying. But when she got pregnant she was in terrific physical condition, so we felt that she would make it through.
Obstetrician Fadi Khoury
Early on in her pregnancy we were worried about birth defects from the blood thinner. Then we worried about her heart as it got more and more stressed. The blood volume that the heart has to pump increases by about 50 percent during pregnancy. We were also concerned about the baby's growth. If the mom has a compromised heart, it may lead to less blood flow to the baby. We're so happy everything went smoothly. Deya's heart is remarkably strong today.