Surgery to Mend a Broken Heart
This is Part 3 of the I Am a Stay-At-Home Dad series. Click here for the rest of the publication.
The first major heart scan came in January 2013. It was long, and the scan technician kept going over a few areas again and again. He was a thorough, neat, and respectable Iraqi expat, and it seemed he was trying to get the right picture. “I may have noticed something,” he said. Those words set us on a different path than we ever expected with our upcoming baby.
Eventually, after another few months, they determined that the “something” he saw early on was a serious congenital heart defect known as Congenitally Corrected Transposition of the Great Arteries, or CCTGA. In addition to this, our little one also had a ventricular septal defect (hole in her heart), known as a VSD. My heart broke on the news, knowing that her own little, still-forming heart was also broken.
The prognosis? Hard to determine. When born, the baby might be fine for a while, but would most likely need immediate surgery to help the heart. Because of the difference in pressure from the womb to the outside world after birth, there was no guarantee the heart would even work after she was born.
When she was finally pulled out after four days of labor, I had the sombre task of baptizing our three minute old baby. I poured holy water over her head and said her name and “I baptize you in the name of the Father, and of the Son, and of the Holy Spirit.” I poured water three times on her head as I named each of the three persons of the Godhead. The number 3 also represents the number of days Jesus lay dead in the tomb before His resurrection. When one is baptized, it is baptism into life and into a death at the same time—into eternal life and into phycical death, and yet also into a new physical life and into the death of sin. I wasn’t sure which form of life and which form of death would take hold of my new beautiful daughter.
Luckily, her heart continued to pump strong, and she remained rosy and cute. She grew, and after three months a band was put on her pulmonary artery to reduce the effects of the VSD. She began to gain more weight, and we knew the next step was major open-heart surgery to correct her CCTGA.
“Mamma!” she cried, and clung to my wife’s arms, laying her head on my wife’s shoulder. She was getting dopey, silly, and the effects of the drugs to relax her were starting to show. She rolled her head around and looked sleepily at us with unfocused eyes.
“You’re all drunk!” I said to her, and she closed and opened her eyes like a old man after two glasses too many of brandy. Once the drug was well established, as it looked like it was, the nurses would take her off to the OR and they would begin the “double switch” operation to fix my little one’s heart.
She didn’t want to hug me or let me kiss her. Of course she meant nothing personal by it. But after so many times of taking care of her and playing with her, just the two of us, it didn’t feel good for her to reject my wishes of a final hug and kiss before she was taken away. She clung to her mother, her toddler idea of Life. My wife and I clung to the idea of Life as well, also aware of the risks and the chance that Life might elude us, that this might be the last time we would hold our little girl. This is something that no parent needs to ever feel, and those that have, I sympathize with you. A black void opened up in my heart, even though we were confident we were doing the right thing and that she was in good hands. How do you hand your daughter over to someone knowing you may never see them again?
Every hour that passed as we waited brought a memory to mind: the times where we read a book over and over again on the living room carpet, the afternoon sun in our eyes. Her, stealing my bookmark and running away laughing, hoping I’d chase her and attack her with tickles. Her, crying when she fell in the bathroom, asking for me to kiss her head where it hurt. Her, running towards her mother or I upon seeing us at the end of a day at daycare. Each memory was pointed and joyful, mixed with a sadness. Each hour was eternity. We tried to distract ourselves. Texts came in asking if any updates were available. Four hours. Five hours. We knew this would be long. Other parents in the OR waiting room came and went, yet we remained. The screen on the wall flashed her initials and Patient Number, forever reading “Status: In OR.”
Six hours. It was now about the minimum time we expected the surgery to last; it could be up to fourteen hours, even without complications. “These things take time,” the surgeon had told us. “We need to control bleeding. Sometimes we need to warm them up, or cool them down. This takes time. We expect about three hours with the actual heart operation, but six or more, maybe the whole day, for the whole process.” Six hours. “In OR” flashed as her name came up again. Finally the surgeon walked in. He motioned for us to come speak with him, but I saw the look on his face. It was stern and emotionless, and he was still wearing his scrubs and surgical hat.
CCTGA is a condition where the heart is grown in backwards in the ventricles, and the arteries that go from there to the body are also swapped. The heart functions “normally” in this case, but the wrong muscles are doing the wrong kind of work. Over time, these muscles most likely will give out, and you’d have major heart failure. It’s like if you walked backwards all the time—you could do it, but your leg muscles weren’t built to quite work like that, and you’d have major problems later on.
The solution to all of this is to create a baffle to move the blood into the correct ventricles, and then to swap the arteries again. It’s called a “Double Switch” operation because they not only switch the roles of the ventricles, but they also switch the arteries. The heart, with this extra plumbing, would not only work correctly with this procedure, but the right pieces would now be doing the right jobs. Of course, things are much more complex than I can explain here, and there are many risks involved.
One risk is death. In the hospital, they call it “mortality rate.” But we know the difference, and we can see it in the face and hear it in the in-between spaces of words. Death. This procedure could result in the death of my little baby girl.
On top of that, there is a risk of stroke, which won’t be known until after she is out of surgery and recovering. There could be infection. There could be the fact that the heart just doesn’t respond well to the surgery. There could be, there could be, there could be….
I speak positively when I’m around others, but in my mind I imagine the worst. In that waiting room, I imagined what it would be like to have to tell my family that something horrible has happened. I imagined how I might react, or how my wife my react. I imagined—and found that I couldn’t—a life without my daughter. Everything seemed cold and gray with this possibility hanging there.
The surgeon pulled us in the room, and these thoughts flashed through my mind. “Stay positive,” I told myself. “The chances of success are very high. Focus on the good.” I prayed the Jesus prayer to calm myself: “Lord Jesus Christ, have mercy on me, a sinner.”
“Cautiously optimistic,” was how the surgeon characterized the procedure so far. There were other details, but I hung on to those words. “Cautiously optimistic.” They were “ok” with the surgery, and while she would still be in the OR for a couple more hours, the hardest part was done. Things looked optimistic. He would see us again in a few hours.
My mom and a friend were waiting in the room for us as we emerged. I don’t know what my face looked like, but it was still too early to be jumping up and down, so I just gave them a thumbs-up as I approached. My mother cried. I sat and waited for the other shoe to drop. I waited for the inevitable news: that something happened, that a sudden surprise came up, that the words “cautiously optimistic” were just a set-up for the natural disaster that was coming.
But that disaster never came. We waited more, and waited more. Still the sign said “IN OR.” I felt almost more tense than I had before the doctor’s update. The prayers didn’t seem to do much. The room got hot. My arms itched.
Just as we felt we couldn’t sit any longer, she was released to the Critical Care Unit for recovery. We could see her. The surgeon spoke with us, and said that while complicated and difficult, the surgery seemed to go well, and now we would wait. We could visit and touch our daughter again.
It’s hard to see your daughter with drainage tubes in her chest, a closed wound over her heart, on a ventilator, wires and tubes and beeps and bells everywhere. But there she was, pink and alseep. We kissed her fine, angel hair. We stared at her and counted our blessings. The stress didn’t let up, but it changed. It was hard to believe it was this close to being over.
The text messages buzzed on my phone, and we made the necessary calls and announcements. She was out of surgery, nine hours total, and she was doing ok. The relief came in waves, and it all still felt too hard to believe, too soon to let go of the tension and worry.
The outpouring of love and support was amazing, and despite my dislike and reservations about Facebook, at times like these it can be useful. Congratulations and prayers were being said all over the world, from old and young, Muslim, Christian, and atheist. One of the most powerful things to read was an atheist friend tell us that he was praying for our daughter, even if he didn’t think prayer necessarily worked. The power of life took hold of my daughter in a new way, and the world seemed to celebrate with us.
There is still a long way to go, a lot of healing, and a lot of questions to be answered about how this will continue to affect her. The surgery may not give her a longer life, but it most likely will. It’s not a complete fix for everything, but it’s better than leaving her the way she was. The most important thing is that she gets a better shot at a fuller life now, and her broken heart is now fixed. In time, mine will be as well.
I stand at her bedside as she begins to sleep in the ward. She’s been off sedation for days now and healing quickly. She’s off of her IVs and is more clear of all the hospital clutter, but two drainage tubes run out of her side, collecting the liquid that runs into her chest cavity. I’m reminded of Christ’s spear wound in his side, which gushed forth water. “Surely he was the Son of God!” the Centurion cried when he saw it. Hers tubes are full of reddish liquid which are collected and measured. She begins to sleep now as the small morphine boost kicks in, and she relaxes. She itches her chest wound a little, flutters her eyes open and closed. She reaches up for my finger, and grabs it. Once she finds it, she settles a little more and begins to sleep. We are connected again, a whole unit, no longer broken, ready to leave the hospital and begin our life at home once again.
