Heart Warrior

This week, ending on Valentine’s day, is Congenital Heart Defect Awareness Week. It's to spread knowledge, but also to celebrate those, like my son, who endure so much for something over which they have no control.

My son has a congenital heart defect (CHD), called a coarctation of his aorta. It does not define him, but it is part of him.

What does this mean for him? It means there is a narrowing in his aortic arch, which brings blood to his lower extremities. We found out when he was two days old.

Even now as I lay beside him, one arm draped over him, thinking about the past year stirred up a storm of tumultuous emotions and I tightened my grip on him. It’s that involuntary parental response we have, as if by hugging our children closer we could protect them somehow.

I remember that during our pregnancy, when we were at the height of our fear about Desmond’s heart,  I spent many hours fervently and pointlessly wishing that I could give Des my healthy heart. So had his father, Derek. We were both willing to give our own hearts to make his better, but it was a wish without substance or any way to fulfill, its good intentions evaporating into the air with the breath it was expelled upon. It was merely one of millions of unheard wishes of parents with sick children all around the world. If only wishes mattered.

This is a diary in reflection. I write about a lot of the difficult periods in my life while they are actually happening, because it helps me to process the emotions, and keeps them from eating away at me. But I didn't write about this until now. It was too raw. Too terrifying. I was also an overwhelmed, borderline depressed new parent who struggled to cope with day to day life. Every time later I tried to sit down and write out my thoughts it was like skimming the surface of a murky pond and being bounced off of it. I just couldn't let myself sink back in. I guess I'm ready now, or feel like I owe it to Des to remember these difficult times, to celebrate who he is, what he’s been through, and what he stands for rather than hiding or ignoring it. I am writing this for Des, but also for parents who are going through the experience of having a child with a CHD. Everyone has a different story, but I imagine the emotional rollercoaster is similar, and it finally seemed the right time to share.

It had been a tumultuous pregnancy for us. He was our miracle baby, conceived after the doctors told us we had virtually zero chance of conceiving naturally. That already added a lot of excitement but also anxiety to the pregnancy. The pressure for the pregnancy to go well was intense. If I miscarried, or if anything went wrong, there was the possibility we might never have children.

At an extra thirteen-week scan, a couple days after we announced the pregnancy to a slew of congratulations, the doctor saw something a bit off about our baby's heart. They hinted without explicitly saying that it might be hypoplastic left heart syndrome, which is a severe heart defect that requires three open heart surgeries to reroute the blood vessels so that the right side of the heart can function for the whole body. We were dropped into an existence that had previously been on the edge of our awareness. I knew one little baby with a heart defect, but I’d never really stopped to think about what that meant. Because of our age, I’d worried about Downs Syndrome, but a heart defect? Never.

Suddenly, our more common worries during the pregnancy, such as what kind of parents we would be (and whether we would have a super energetic baby that never slept) seemed unimportant. Our discussions now consisted of quality of life, survival rates, and scientific jargon that strained the portion of my brain that had been sleeping since my early twenties when I had abandoned biology for photography. The joy of the pregnancy had turned sour and dark, and Derek and I existed in a space together where the walls closed in and the water was rising. We clung to each other, never sure if we were each other’s life raft or drowning ourselves in shared grief.

The twenty-week scan parted those clouds a bit. The cardiology specialists weren’t as worried. They would monitor how our baby’s heart developed but they thought he might be ok. We could breathe again. I could look at all of the congratulatory messages that I couldn’t stand to read previously. I could think about a future again. About him, the creature in my belly that had become the center of our world without doing anything at all except being conceived. 

The 28-week scan was even better. His heart looked normal. We rejoiced. I did an uncoordinated dance for joy. Our baby was going to be fine! It was the best news, I could not imagine a better moment in life, our baby would be healthy, he would have all the opportunities we could provide for him. Life was ok again. The sheen was back on.

Des wasn’t ready to come out on his own. At 13 days overdue I reluctantly agreed to an induction, giving up on my dreams for a natural labor. It was a three day, intensive, exhausting and harrowing experience. But on November 23, at 5:56 in the morning, and 16 days overdue, our little miracle was born. He seemed perfect, and perfectly healthy. Whatever emotions could squeeze through the fatigue were akin to relief, and happiness, in that order. 

My mom and sister, Rianna, came to the hospital to watch Des for us so we could get a few hours of rest after three sleepless nights. I passed out and Derek went home for some uninterrupted shut-eye. And thus it happened that a few hours later Derek was on his way back to the hospital when I was called in for Desmond's birth day checkup. They went through a battery of tests checking reflexes and organs and head movement. I wasn't even a little worried. I was just wishing that Derek was with me to see Des perform so well. He was aware and strong, and healthy-seeming. So it came as a shock when the nurse told me she heard a heart murmur. She could barely hear it and she assured me it was probably a hole in the heart that closes on its own in a few days. But just to be safe they wanted to do an echocardiogram, which is an ultrasound of the heart. I believed her. Maybe I just wanted to believe her, but she seemed so nonchalant and encouraging. I did not connect this to the troubling scans, because heart specialists had done many scans since and assured us his heart looked fine.

We spent the first night in the hospital getting to know our little Desmond, who from the instant he was born seemed alert and aware in a way most newborns aren't. He focused on us. He seemed like he had been here before. He made his opinions quite clear from the start. He liked nursing and skin to skin. He loved being held and he hated his cot.

The next day we waited a long time to be seen by a doctor. When he finally arrived he used a stethoscope to listen to Desmond’s heart. He could hardly hear the murmur and we were encouraged even further. The doctor who was supposed to do the echo wasn’t in, so we were eventually discharged, with an appointment the following day. It was wonderful to finally be home. Both my parents and Ria were there. Everyone cooed over the new family addition. After a horrifying labor our ordeal finally seemed over. Now we had time to recover and get to know each other. I was exhausted but sublimely happy. It felt right, like everything new parenthood is meant to be. If we could only figure out how to get Des to sleep in a cot we would really be on our way.

We entered the echo on a wave of positive energy. We both saw it as something that had to be done to show the doctors Des was fine and to put all of this behind us. It only took a few minutes into the echo for that positive energy to evaporate. The doctor did his best to keep a straight face but he was taking a long time. He was looking at something in particular, that he went over and over again. Our anxiety ratcheted up. It was like returning to that first horrible ultrasound during the pregnancy where no one was talking to us but their silence mounts to a sense of impending doom, suffocating us in the process.

When he finally did speak, it wasn't with good news. I didn't understand all (or even most) of what he told us, but he thought Des had a bicuspid valve, which didn’t seem to be posing a problem at the moment. The major concern was that he was having trouble finding blood flow to the lower extremities and he wanted a colleague from Great Ormond Street Hospital (GOSH), the UK's best hospital for children, to have a look.

The silver lining on that day was that Dr. Michelle Carr happened to be at the hospital when we were, and the doctor who looked at Desmond managed to snag her to do this extra echo. She had a calming, self assured presence and she brought with her the certainty that whatever happened, Des was in the right hands.

Her echo confirmed what the first doctor had suspected and feared. Desmond had a coarctation of his aorta. The term was vaguely familiar to me - I remembered reading about it when I was doing my HLHS research during our pregnancy. But I couldn't remember much other than it was a heart defect.

Our son had a heart defect.

Our lives, and his, were irrevocably and forever changed with this realization. There was no going back or changing fate - this was his future, and by extension, ours. I couldn't absorb a lot of what she told us except that it was bad enough that she wanted to schedule us into GOSH right away for surgery. We went to the waiting room in tears. Des, who had been extremely patient to this point, was having a meltdown of epic, newborn proportions. I took him into a separate room that they had for new mothers. Someone was pumping in there. I took my precious new baby, my seemingly perfect and healthy baby who was actually very sick, and I turned to the corner so the other mother could not see me as I wept while I fed him with very sore boobs. Even through my sorrow, I couldn’t help but wince like any new mother adjusting to the pain of breast feeding. It felt wrong, somehow, to hurt, when Des was going through so much, but I did. 

We found out shortly thereafter that GOSH didn't have room for him that night but we were to check in tomorrow. Derek and I bundled our baby back into his car seat to go home for what would be the last night for over a week. My parents were waiting for us when we returned. Rianna, who had already extended her trip just to be there when Des was born, had flown out that morning. She left a sweet, unknowing message to us about our new family that stung me with the irony of how life can change in a matter of hours.

My parents must have known something was wrong as soon as they saw us but I couldn't face them and I couldn't bear to tell them myself. I think I said 'we have some bad news' and then told them Derek would explain as I walked the car seat with a sleeping Des into the living room. My heart was already broken, I couldn't be the one to break theirs, I let my husband take that burden from me. I stared at my son, his presence filling my entire, blurred vision, and as Derek told them what we knew, I began to fill up with an intense terror and fear that every parent has experienced for a child in perceived danger. It was an overpowering emotion. I took him out of the car seat and pressed him to me, wanting to somehow protect him from this, to never let him go. It didn't matter that I had only met him yesterday. He had completely and effortlessly become the center of my world. The thought of something happening to him seemed like the end of everything - I could not imagine life beyond that. My mom knelt by me and drew me into a hug, and we cried together while I clung to my son. We took pictures of our family that night, Derek and I puffy faced, because I feared we might not get another chance. Because this was part of his story and I didn’t want to pretend it wasn’t so. But the picture I never took and only realized too late and will never have is of Desmond's back unscarred. Derek says it’s ok, that the scar is part of who he is. But I still wish I had that picture.

We checked Desmond into GOSH the next afternoon. We were told they would operate on his heart through his side - a thoracotomy. They would ‘fix’ him by resecting the piece of his aorta that is narrow and reattaching the other ends. Another silver lining - that he would not have to have classic open heart surgery through the front where they have to stop his heart and pump blood through a bypass machine. This way, his heart is still pumping blood to his brain and top half, and they only cut off the flow to the lower extremities for fifteen minutes. Most kids, they told us, only need the one surgery and then to be monitored for the rest of their lives to make sure the coarctation doesn’t return. We just had to get through this and he would be ok. Just this one surgery. Everyone at GOSH was very reassuring. We met the surgeon, we met the team, they talked through everything with us. They went over the risks, one being death, but they said that it was a very small risk, as likely that we would be out and get hit by a car. I found that reassuring, though peversely, now when I cross roads with Des, I’m always worried about him being hit by a car.

Derek and I both stayed with him all day, except for a brief period of time when Derek went to get food and the nurses came to put Desmond's first stent in. I wanted to be there, but they ushered me out, saying it was for the best, and I felt too weak and emotional to protest, so I just went to the kitchen in the hospital and cried instead. 

Des was a trooper. He was mostly stuck in his bassinet but we constantly hovered around him and held him when we could. Nighttime came and then they asked Derek to leave because only one parent is allowed to stay overnight. That had to be me because I was breastfeeding. And by 4:00 a.m. I had to stop nursing because they require at least 4 hours before surgery of no feeding so the child's stomach is empty. My milk came in right before the last feed, so he had one taste of milk before I wasn't allowed to feed him anymore. Not being able to feed him when he was hungry was one of the hardest bits for me. Nourishing my son was all I had to offer - and then I couldn’t even do that. What’s worse is that his surgery was delayed, so it ended up being closer to six hours. He was hungry, and I obsessed over this, which seemed easier than obsessing over the fact that surgeons were about to knock my four-day old son out with drugs and cut into his main artery.

I pumped for the first time so that I could have milk for his feeding tube. They wouldn’t tell me how much to pump because they didn’t want to stress me out in case I couldn’t pump enough, so I pumped every few hours as much as I could. I pumped so much, that later, when I was able to feed Des again, my over production was a problem. It was a dirty secret in my brain that a tiny part of me was relieved to get a few days’ reprieve from nursing, because it had become so painful. I felt guilt for this relief at Desmond’s misfortune, but it was there nonetheless, mocking my view of myself as a good parent.  

Derek returned the earliest allowed. Then they wheeled Des to anesthesia and we were allowed to go with him. 

Des, up until this point, had been stoic. He hadn’t cried, even when he was hungry. But when the anaesthesiologist laid him on the table, it’s like he knew what was about to happen. He started screaming and flailing. As they put the mask on him and he went limp we were ushered out. It was an awful, horrible moment, to see the fight leave him so quickly. We left in tears. We were trying hard not to cry in front of Des, to be strong and positive for him, but seeing him like that...it was more than either of us could handle, and it seemed ok to let go.

Those were long hours. I don’t remember what we did. It’s a dream, a nightmare, a blur. It was too much worry. I know I kept repeating to myself that he would be fine, reassuring myself that we were at one of the best hospitals in the world. I know we were in the canteen at some point, waiting for news. The longer it took the more anxious we were.

We got the news that Des was out of surgery, and was doing well. We felt immense relief and raced to the NICU. Seeing him for the first time was brutal. He was hooked up to a ventilator, a chest drain, a neck stent, a hand stent, and a feeding tube. He looked so foreign and frail. To lighten the obscenity of it all, we joked that he looked like Bane from Batman. But the doctors assured us he had done well. He was also totally out of it, on morphine. I always smile a bit at parents cautious to give their kids Tylenol, because I think, shit, Des was on morphine at four days old. 

We stayed with him until the evening and then the nurses strongly recommended we both get rest. There was no point in us staying in the hospital. There was no bed in the NICU, and he was so knocked out, he wouldn’t be aware of us. They told us it was important we take care of ourselves too. Especially me, they said, recovering from a three-day birth and no sleep for as long as. I felt the truth of it. I was beyond any point of exhaustion that I had experienced before, I had tipped way over even my most extreme end of the sleep deprivation scale. I was bleeding and sore and completely spent. So we left. My parents brought us Thanksgiving dinner, because it was Thanksgiving. Derek and I ate it together that night. It was sad, but also a celebration. We hoped the worst was behind us.

Desmond’s recovery was quicker than the doctor’s expected. His ventilator was off within a day.  The first moment I was able to hold him again was beautiful and sweet. We were both smiling. You may not think it's possible for a baby to smile who is only a few days old, but the first time he smiled reactively was when I held him in my arms after the ventilator came out, and I know this because he has smiled in reaction to us purposefully ever since. We always knew he was an old soul (and also 16 days overcooked).

We spent every hour with him we could to keep him company. We would read and sing to him. 

We even had our lighter moments of goofing around. 

Tubes kept coming off every day. 


The final hurdle before they would remove the feeding tube was if he would start feeding again. They cautioned me that babies having undergone surgery often forget how to feed. For some reason I was never worried about that. Des had taken to it so quickly and so naturally, I couldn’t believe he would forget. The hardest thing was getting him to be hungry and awake enough to feed. They wouldn’t stop feeding him through the tube, which made me mad, and his frequent naps kept making it difficult to coordinate. But I finally managed to wake him up enough to latch on. My parents were there when they took the last tube out. It was a momentous occasion.

All he had left from the experience were the punctures from the chest drain, and the cut from the surgery, across his left side and around his back. Both have since healed to scars which will always be a mark of what he has been through.

Within 9 days he was out of GOSH, and it probably would have been sooner if we hadn’t been stuck there over a weekend when most of the doctors weren’t in. During that time, a core group of people really kept us going. Our families and a few close friends. We didn’t tell anyone else because it was so all consuming. And really hard to talk about. But I very much appreciate what everyone did - bringing us whatever we asked for, visiting us, letting us vent over the phone, sending us positive wishes, keeping us sane.

My parents had to leave the morning he was discharged. They never got to spend any time with Des post surgery at the flat. Not only had I been so overdue and my labor taken so long, but then we spent nine days in hospital. I felt irrationally responsible for all of it.

We returned home and Derek immediately started back to work, because his paternity leave had been used up on labor and hospital time. I went straight from the hospital to taking care of a baby on my own. The weeks I’d imagined of the three of us adjusting together as a new family, with my parents and sister there as support, just wasn’t to be. My friends came for long lunches, and so I could shower. They were a lifeline. But I was struggling to stay afloat. I was depressed about the induced labor, about the episiotomy I hadn’t wanted that had virtually been forced on me, about feeling completely inadequate as a new mother, not knowing what to do, struggling with breast feeding because of my hyper lactation due to the excessive pumping at the hospital, about the fact that no one in my family had been able to spend much time with Des. That our families were so far away. And of course about Des’s heart, which was trauma I couldn’t properly process.

Derek’s mom and step-dad came to visit, which was wonderful. Having family around was exactly what we all needed. We got to spend time with them, and Des got to virtually meet and spend time with his Aunt Kristen and Uncle Steve. It was a bright spot, a parting of the clouds, but too fleeting, and once they were gone I continued to exist in a fog.

What finally brought me out of my funk for good was when my other sister, Andrea, and her husband, Jay, came to visit over Christmas for two weeks. 

It was exactly what I needed. It helped me reset myself. I could move forward again, stop obsessing as much over what I couldn’t change. They gave me space to figure out a better routine, to get better at being a mother, to simply rest more. I could begin to appreciate this son of mine, who had been through so much already in his short life, and yet had proven resilient, so energetic and full of life, so determined to learn and grow every step of the way, to let nothing stop him. He did not overthink or worry about baggage. He simply kept going fearlessly, always reaching for more. I was inspired by my own newborn. I needed to be more like him. Except when it came to sleeping. In that one area, it would have been nice if he were more like me.

Desmond’s difficult journey was not over though. For many babies, one surgery is all they need, at least for many years. Not, unfortunately, for Des, who has always defied statistics. By the time he was six months months old, at his second follow up appointment, they saw that the narrowing was returning. Or more accurately, that scar tissue was forming and not growing with him. They recommended a balloon catheterisation to reopen the narrowing. This is an outpatient procedure, though they did have to put him under.

The second time they put him under was even worse than the first. The anaesthesiologist was the first person at GOSH we didn't trust. She seemed scattered. She practically threatened our son during the process, because he was struggling so much, though at first she was using a mask that was much too small for him. It made us both nervous, and when they finally were able to get him under, we were ill at ease. I kept thinking in my head, that’s right Des, never stop fighting. Never, ever stop fighting. All the times he had been so stubborn and fought me on what he didn’t want done, that he has forcefully shown me however he could communicate his indignation or feelings on whatever we were attempting to do that he didn't like, it was all a sign of the strength and force of his personality. All of that resistance is what makes him such a fighter. I was so glad he kept fighting this perceived injustice, and almost won even though she outweighed him easily seven to one. 

For the procedure, they threaded a thin catheter through his artery to stretch the opening where it was narrowed. When they finished, they came to speak with us, and the news was bad – again. The procedure had helped, but unfortunately not enough. Not only could they not fully expand the narrowing due to other veins that were located too closely to the site, but they thought his arch was slightly hypoplastic (underdeveloped). They said he will need another heart surgery in the future to put in a patch in for the hypoplasia, and also to properly re-expand the narrowed opening.

All of the horrible emotions came crashing back down on us, though we tried to remain positive for Desmond’s sake, who was coming off of anesthesia and none to happy about it. We had thought our baby would finally be free of this. But we had to come to terms with the fact that he would never be ‘cured’ or fully ‘fixed’. That was hard. Maybe as hard as realizing that he had a heart defect in the first place. Focusing on Des is what helped us the most. Watching him return to his normal, energetic self after an hour of grogginess, not letting the pain of his thigh or the trauma of the experience get him down, that helped to lift Derek and I up again. I realized then that though Derek and I pretend to be strong for Des, it is really Des who is consistently strong for us.

His heart problem is something he will have to deal with as he grows. It’s taken a long time to come to terms with that, but we are getting better about it, trying to view it just as one more set of challenges that Des will have to hurdle that others don’t. He is tough enough to handle it, of that I am certain.

My greatest fear is that the next surgery may require a bypass machine, which carries with it greater risks. We don’t know exactly when the next surgery will be. His arch is open enough for now that it’s not an immediate problem. We go in every few months for echocardiograms to check how he’s doing.  

Our last appointment to assess him was in mid January. Our next appointment is in late April. 

Each echo that shows he is stable is a huge relief. Each time we go in for the next one we are filled with anxiety.  And in between we try to live life as normal.  It’s nothing acute and we know what to look for in case it does quickly get bad. In the meantime, he seems completely fine, except that he gets really sweaty, which has been associated with his heart problem, but is also probably related to being Derek’s son.

We try not to obsess about the fact that he will require another heart surgery. We will wait as long as we can for him to grow as big and strong as possible. In the meantime we are not as helpless as I once imagined. We arm ourselves with knowledge, reading as much as we can to learn about his coarctation. Better to know the enemy than to ignore it. Better to understand the ramifications of the surgeries he has had (and will yet have), such as the higher risk of aneurism later in life. Knowing means potentially preventing or catching a side effect before it can become serious. This, at least, we can do for him.

Overall though, on a day to day basis, Desmond’s life is pretty normal. If you have ever met Des or have seen photos of him, you would not suspect he has this problem. He is full of energy, all of the time. He runs us into the ground and is still ready for more action. He lives life on full throttle. He loves new experiences. He loves to travel. He loves new people way more than me. He could make the grumpiest person smile. He is opinionated, lively, beguiling. Stubborn as hell. Mischievous and adorable enough to get away with it. Sweet and loving. Strong, so strong. And fierce. He may not be able to fix his own heart but he will win any of yours in about three seconds. He is not defined by this but it is something he will have to deal with his whole life. What gives me hope is not the doctors, but Desmond himself.
He is my heart warrior.