| THE HOMEBODY'S GUIDE: |
LEARNING ABOUT OUR BABY'S AVSD DIAGNOSIS
I can still remember how it felt sitting in that cold, hard chair at the doctor's office, the one with the thin, crinkly paper underneath it. My legs were restless, like I was running a thousand miles an hour, yet my body was as stiff as it had ever been. Earth-shattering. I guess that's what that feels like when you get news so awful, your body shuts down and runs away all at once.
That morning, almost eight months ago from when I’m writing this, David and I went to our first high-risk OBGYN appointment. But before I tell you about that, I suppose you’ll need some backstory.
Our 20-week ultrasound was something that we counted down the days for. We couldn’t wait to see baby Olivia again, who now resembled a real baby rather than a squishy, awkward little alien lizard as she had previously appeared in most ultrasounds prior to this one. Today was supposed to be the day where we made jokes about how short her legs were (like her mama) and how active she was (like her daddy). We were supposed to have a standard 20-week growth appointment, where all of her limbs measure normal, and we get to walk out excited for the next appointment. And some of that happened, but not the way we thought. And even at the time, it didn’t seem like anything was truly off.
“Her femur is measuring a bit small…” said the ultrasound tech, to which I replied, “As in, she’s going to be short? Or is it something of concern?”. That's when we first learned that our baby measured in the 4th percentile. As it was explained to us, anything under the 10th percentile is a cause for concern. “We are also having a hard time photographing her heart” she added, which made perfect sense to us, because our little Olivabean was a jumping bean during the entire ultrasound, tumbling and moving around like crazy. ‘Out of an abundance of caution', we were sent to a high-risk doctor because of that, and even at that point, I still didn’t think too much of it.
A week later, we step into the high-risk OB office. It’s so quiet, and there are Welch’s fruit snacks in a bowl by the front desk. The office has a spiral staircase and the tallest floor-to-ceiling windows. A mini-fridge housed ice cold water bottles, and there was a coffee and tea machine in the back. It was designed to make you feel comfortable, to ease some of the tension of having to sit in the waiting room of an office meant for high-risk pregnancies. But it didn’t, really. And as we sat there, with our masks on per covid protocol and our nervous laughter, it felt more and more empty. Maybe it's because we were the only ones there, or maybe it was because our hearts knew there was bad news headed our way just around the corner and through the door.
We were walked into our appointment room, which was themed Lilo and Stitch. Ohana means family, I thought that was so cute and fitting. We had soft jazz playing in the background, tunes of familiar popular songs. Then the tech came in and she was beyond sweet as pie. She seemed like a fairy. You could see her smile through her eyes, which helped us feel at ease since we couldn't actually see her smile through the mask. She was reassuring. Our tension seemed to subside the more small-talk we had. We chitchatted as she maneuvered the ultrasound wand around, and we made little jokes about how much Olivia was moving around as she was trying to perform the Echocardiogram. I told her how the other OB doctor mentioned her small femur, and she assured me that upon further inspection from the echo, the femur didn’t seem so small in comparison to her body. I was able to breathe a little better now, knowing that the Echo would be able to capture photos of Olivia’s heart even if she did wiggle around a little extra. No arms would get in the way of the technology of the echo, no amount of squirming into a little ball or turning over would block the echo from getting what it needed. I breathed a little easier after that, and let the sounds of familiar pop songs in jazz take over my mind.
The sonographer said she had what she needed, and she would speak to the doctor who would come back in to give us the results. During the wait, David and I celebrated a little victory about the femur size. All of that worrying for nothing! We texted our family letting them know that all looked good, the tech was able to get photos of the heart, and now we’re just waiting for the doctor to confirm before we head out. We made another video update, just as we always did after an appointment, so that our future-selves could watch back and relive. After this appointment, it would be a while before we would record another video update at all. What happened when the doctor came in for the diagnosis lives in my mind only in pieces, much of it a blur.
Atrioventricular Heart Defect. Congenital Heart Defect. AVSD. CHD.
No matter how much you condensed the words, I still couldn’t process it. The world under my chair opened up, and I could feel gravity taking over my body as I felt like I was falling down into a hole. I wanted to rip my mask off, I couldn't breathe. Wait, it wasn't the mask, it was me; I was holding my breath. I grabbed David’s hand to try and stay grounded, but my mind slipped away anyways. I couldn’t hear what the doctor was saying anymore, it all sounded muffled and miles and miles away, like the teacher in Charlie Brown with her “wah wah wahs”. I could feel my face getting hot, the back of my neck start to sweat, and my peripheral vision start to turn black. No, krysti, keep it together, it's important to listen, don't faint now. A heart defect? But how? I cut out coffee, I threw away all of the skincare products and soaps with harmful chemicals, I took my prenatals every single day since day one (and even before that, since we had been trying to conceive for so long). I went down a list of reasons, none of them valid, and none of them the cause. And in between those thoughts, little snippets of the doctor’s voice. “1 in 1000 babies” “high risk of down syndrome” “growth in the 5th percentile” "at this stage, the hole won't close on its own" "cause for concern”.
“Is she viable?” The question left my mouth before I even had time to process. Did I even want to know the answer to that? Of course I did. I absolutely did not. I couldn’t decide. “Yes, she’s viable” he reassured me. I finally took a breath. My brain began to process, slowly climbing out of the dark hole. I could hear him as if he was sitting across from me now, rather than miles away. I could feel the blood circulating through my fingertips again, still holding David's hand. I could hear David’s foot tapping nervously on the tile floor. “What are our options?”
Option 1. “We could do an amniocentesis.” The risk of miscarriage by doing one, though, is 1 in 1000. It would be able to tell us if the heart defect was caused by an underlying genetic issue, like Down Syndrome (a 50% chance in most babies with AVSD), but it would not give us any insight as to a treatment plan. Its sole purpose would be to mentally prepare us for a baby testing positive with Down Syndrome. I knew immediately that this was not the route we wanted to go. 1 in 1000 is what got us here in the first place, and I don’t want to risk those odds again. Regardless of the outcome, she would be loved just the same.
Option 2: “We can discuss terminating the pregnancy, should you want to go that route.” This option sank my heart. Can we talk about the odds of survival? Oh wait, maybe we did and I wasn’t listening... Either way, it's a hard, hard pass. What’s next.
Option 3: “We can set you up with some counseling”. Seems like the only viable option. Let’s do that.
The doctor gave us some time to be alone in the room to take our masks off and gather ourselves to discuss our options and process the news he had just given us. I can’t explain to you what happened after he left the room, not because I don’t want to, but because I don’t even know how to put it into words. The feeling of someone telling you your child has a hole in her heart, will most likely face an open heart surgery very early on, and may have other suspected but undetected issues… I mean. It’s awful. Earth-shattering.
We left that appointment sick to our stomachs. The drive home was a long one. The next few hours were excruciating as we relived the conversation with our families. Each time I expected it to get easier, and each time it was just as hard. Until the end of the night, I was so numb to it, I was finally able to tell the news straight through, no tears.
The next few days were a blur. David was researching, I was trying to stay off the internet, worried that too much stress could further affect the baby. I spent a lot of my time crying because of the diagnosis, and then crying more because I was worried that my crying would harm the baby. I joined family support groups online and reached out to other moms going through similar heart conditions with their little ones. It helped, but at the same time, it didn’t. I did a decent job at staying off of the internet in the next few days, letting David and my dad handle the research phase of it all. It wasn’t until we learned that the success rate of the open heart surgery was over 90%, the possibility of only needing one surgery was high, and the mortality rate of this specific type of AVSD was the best-case scenario (complete and balanced AVSD), that I was finally able to sleep a little better. In those moments, David and I discovered new sides of ourselves. Not yet officially parents, but we sure did feel the pressure and responsibility to make the right decision. Did we select the right doctor? Did we research surgeons in the area? Did we research nearby hospitals? How about out-of-state hospitals? Did we do what we were supposed to during the pregnancy? Did our covid-case back in December cause this? In those weeks, although our questions and worry increased, so did our support and love for one another. I look back on those days and feel so grateful that we chose each other to be with; your support system matters. I would not have gotten through those nights without my husband.
These past few months have been a blur in terms of emotions. It’s been difficult to process. Out of 1000 babies, why ours? Why anybody's? So many months praying to start a family, and now facing the fear of losing her, why us? The questions circled in my brain like vultures. We prayed every night for clarity, for peace, for healing. And God delivered. It may have taken me several months to write this, but since then, there is a peace in our hearts that can only be described as God-given. No more panic-worrying, no more uncontrollable tears. Just faith and trust that God will keep his promises.
When we first found out we were having a girl, we decided to name her Olivia Ren. Many people have asked us where her name comes from. Ren means love, but it also means lotus flower in Japanese. The lotus flower has always been my favorite flower because of how it grows. Did you know that it grows as a seedling underwater, underneath mud? It grows in the dark, and as it grows, it comes up towards the sunlight. When it finally surfaces, it blooms a beautiful white flower, pure and delicate. I’ve always thought of the lotus flower as a symbol of strength, that no matter what darkness or hardships you go through, it’s just a way to make you grow as a person, and it doesn’t mean your end result needs to be muddy, or calloused, or rough. You can overcome the dark, and still be delicate. I didn’t know when we picked Ren as her middle name that she would already be going through hardships from within the womb. But I suppose God knew when he placed that name in my heart. Ren. Our little warrior lotus flower.
We are so beyond grateful for our doctors and their staff who after this first visit, encouraged us and helped us cope with this diagnosis. Many times throughout the pregnancy, my hospital bag was packed and in the trunk of our car in case things took a turn and we needed to deliver her early. In addition to the diagnosis, I had other complications during the pregnancy. Two rounds of steroid shots to help her lungs develop. NIPT tests at every doctor's visit. At one point, we made the 30 to 40-minute drive to the doctor two times a week for almost 2 months. Pregnancy was rough, but worth every hardship, every tear, every early morning and late night. I would do it all again to feel what I feel now. There is nothing in this world as fulfilling as holding your child in your arms. Whether it's the first time or the hundredth time, it feels just as surreal and just as heart-warming. There is nothing like it.
We have a scary road ahead, and it will not be what any of us expected. Having a baby during a pandemic was already unusual, but now there's even more to consider. The risk of RSV can be fatal for any baby, but for her, the odds increase. That means we're Fort Knox over here up until the repair. It's emotionally difficult and challenging, as I know it can seem hurtful to others when we don't attend birthdays, or weddings, or holidays in the same way that we used to. For everyone on the outside, our absence from events may be frustrating, masking at all times may be frustrating, us choosing to not hang out because they were recently at a heavily-populated event may be frustrating. But for us, there is so much more at stake - we could be missing watching her grow up. We could be missing her life. For the months I was pregnant, every day I carried her felt like a gift. I was horrified I'd lose her, and even more terrified once she was finally born and in the NICU that I'd lose her still. Now she is almost 4 months old, and that fear never really goes away. The feeling of being here on borrowed time seeps into my mind when I'm at my worst. To those on the outside, they may never understand that feeling. Keeping her health as our top priority will always be an easy decision: whatever is harmful to her we will keep away, no matter what.
Sometimes, we have this idea of how things should go in our heads, but life doesn't always work out that way. It's so easy to feel absolutely helpless and at a loss of control. It can make you go to some of the darkest places in your mind. I've been there, and I'm just trying to say that no matter how muddy your water is, there's a God who can walk on water, no matter how deep. My faith in God got me through the most draining and consuming moments of this pregnancy. There is a plan, and it isn't mine, and that's okay. I don't need to be in control. I don't need to fix it. My job here is to be a mom. And right now, that means protecting her from what I can, making sure I keep her safe from sickness before her repair is complete, and making sure she is loved beyond measure. God will handle the rest.
The water may look dark now. It will be muddy. There will be times when we'll feel like we can't see the surface. But it's moments like those where the prettiest flowers grow, and I can't wait to see how beautiful Olivia Ren will bloom.