It’s been quite a while since I’ve posted on my blog, so it feels tricky to know where to even begin with this post. For those of you that don’t know me personally or don’t follow along on my blog’s instagram account (@nourished.by.love), I feel like I need to back it up. I shared back in May about our miscarriage from last fall, and how difficult an experience that was. Up until that moment, it felt like the hardest thing I had ever gone through. A few months went by and we were overjoyed to learn that we were expecting again. Although if you’ve experienced a miscarriage before, you know that pregnancy after loss is filled with equal parts joy and fear. Each day and week that passed I wondered if my baby was still doing okay, and each OB visit and ultrasound was filled with panic until a heartbeat was confirmed, when I felt like I could relax again, albeit temporarily.
I was subconsciously holding my breath until the 20 week anatomy scan, where I felt like if things went well, I could finally let go of the fear of losing this baby and relish in the excitement of my pregnancy. The morning of the ultrasound, I was filled with anxious anticipation and the beginning of the appointment went as to be expected. The tech confirmed what we already knew via blood test that baby is another boy (gender disappointment is a whole ‘nother topic) and kept scanning all the various body parts. I was soothed by the sounds of my baby’s heartbeat and began to relax. However, as the ultrasound tech began looking at the heart, things took a turn. It was as if she was struggling to get a good picture/angle— she became less talkative, and simply stayed there looking and looking at his little heart. After what seemed like an eternity, I finally mustered up the courage to ask what was happening, and she admitted that she’s not sure if there is something wrong or if the angle is just not right so she’s going to speak with the doctor. When she left the room, I felt the terrifyingly familiar feeling from last fall when the ultrasound tech left the room. Thankfully Taylor was able to be there with me, unlike my experience last time. We tried not to panic, but both of us had a feeling that this couldn’t be good, and when the tech came back and said the doctor would like to see us in her office, our fears felt confirmed.
The doctor we met with explained that our baby has several, severe heart defects but beyond that wasn’t able to give us too much more information. I began sobbing at the news and wasn’t able to retain much of what she was saying anyways. So many thoughts and questions popped into my head, including “why is this happening to us?”, “we just got over a miscarriage”, “will this baby even survive until birth?”, “what does this mean for the rest of my pregnancy?”, “what does this mean for his life?”. We were referred to Riley Children’s Hospital to meet with a pediatric cardiologist and high risk OB doctor. Thankfully, there was an opening for the very next day so we drove the 2+ hours there, fearful of what new information we would be learning.
At that appointment, we received our baby’s official diagnosis which is Tricuspid Atresia. This is a type of congenital heart defect or CHD. There is a wide range of severity in CHD’s; some are relatively mild whereas others (like ours) are severe. To explain, the human heart has 4 chambers, the two upper chambers are called the atriums and the two lower chambers are called the ventricles. In tricuspid atresia, the tricuspid valve which is the valve between the right atrium and right ventricle did not form, and because no blood flow was allowed through the valve, the right ventricle is also very small. In addition, our baby has an ASD and VSD, which are holes between the two atriums and two ventricles. In his case, these holes are actually necessary in order for blood to flow and get to his lungs.
Once we understood what his defects were, the obvious next discussion was centered around the questions “and what does this mean? can you fix it?”. Basically, there is no “cure” for tricuspid atresia. He will need a series of surgeries to help change his heart anatomy and re-route the blood flow to allow his heart to better function. At 5-7 days old he will have his first surgery to place a band on his pulmonary artery, then around 6 months he will have his first open heart surgery (called the hemi-Fontan), and at 2-3 years old another open heart surgery (called the Fontan). However, these surgeries are forms of palliation and will not “fix” his heart or give him a perfectly normal heart. This is a lifelong condition that he will have and we will have to manage. He will most likely be on medications for the rest of his life, and will need to be monitored closely by a cardiologist for complications that can and most likely will arise as a result of his heart condition. To put things into perspective of the severity of this condition, during several appointments, we were told by the doctors that we have the right to terminate the pregnancy if we so choose. I was shocked. It was like a punch in the gut. That choice never ever crossed my mind, but to hear it coming from the pediatric cardiologists was like being slapped in the face with the realization of how serious this condition truly is.
What has been most frustrating about this journey so far is all of the unknowns. Despite all of this information, there are so many things that the experts cannot tell us because each baby/child/adult with tricuspid atresia is so different. There are some encouraging news that some people with tricuspid atresia are living into middle age now, and are able to live relatively normal lives with few interventions. However, there are those scary statistics or possibilities of babies not making it out of surgery, other (sometimes deadly) complications coming up early on in life, or long-term consequences like liver damage, heart failure, and the need for a heart (or even liver) transplant as early as in their 20’s or 30’s.
When you are expecting a healthy baby, your mind is joyfully occupied by thoughts of what their name is going to be, what they will look like, and what their personality will be. When you are expecting a baby with a serious medical condition, your thoughts are swirling around life expectancy, quality of life, and fears of whether you will be planning their funeral instead of their birthday party.
There is nothing fair about receiving this kind of diagnosis for your child. It feels like a cruel prank, a nightmare that you cannot wake yourself up from. I’ve spent so much of this pregnancy scared, anxious, and angry. A time in our lives that should be pure excitement and joy feels like it was robbed from us. Seeing and hearing about other people’s healthy baby related news has filled me with sadness and jealousy, which then in turns leaves me feeling guilty. I know that everyone has their own cross to bear, everyone has struggles at some point or other in their lives, and it’s childish of me to feel singled out by the universe. However, you can’t change the way you feel, especially at the beginning when you are still processing such life-altering news. I’m not here to sugar-coat this experience or pretend that I’ve been a pinnacle of strength and grace up until this point. Lord knows I have had many low points and my share of dark days.
At this point we are now barely over 2 weeks until my induction date. I will be induced right at 39 weeks to avoid going into labor on my own, because baby will be transferred to Riley’s CVICU (cardiovascular intensive care unit) shortly after birth. We’ve been told that on average, that first hospital stay will be around 3 weeks—barring any complications—until we can bring baby home for the first time. There are so many unanswered questions and lingering uncertainties, but at this point we have to accept that this is all the information we have for now. Part of me is ready for his birth because we will finally have more answers (plus I feel about 12 months pregnant these days), but part of me is terrified for his arrival because right now he is safe in my belly, and I know that his fight begins once he enters into the world. However, as much as we would like to try, we can’t slow down time, so we are trying to squeeze in as much fun and quality time together as a family of 4 before our world is rocked in a few weeks. Until then, we will try to take deep breaths, calm our fears, and remain as hopeful as we can about our little heart warrior.