I’ve been telling you as much as I can about Lorenzo. For carrying him six months and holding him one hour, there is only so much to tell, but even that amount can feel infinite. Today, I also want to tell you about other babies with HLHS. Other babies brought into this world and fighting for their lives. According to the CDC, each year around 960 babies are born with HLHS in the U.S. alone, and any sort of definitive reason why is unknown.

This post is in memory of Liam, with prayers for Hope, and to raise awareness for all the babies facing a congenital heart defect. The fact that I stumbled upon them shows what phenomenal communities have gathered around these families and just how much heart their stories inspire.

Sculpture at Parque Bicentenario here in Santiago. It reminds me that there are others calling the same call and synchronized on the journey.

I’ve been told I shouldn’t look for these other stories about other babies. I’m too emotional. The high, narrow foot-bridge I walk each day is too wobbly to sustain the inevitable comparisons. But I don’t know one other person with this diagnosis in their lives, so I look elsewhere. I try to find the other 959 because the American Heart Association alone cannot tell me what I need to know many days: What was our son truly up against? What would his battle have looked like? With HLHS, there are statistics, but each case depends on each heart and the severity of the condition. You simply cannot know how your baby will react to treatment or what complications may arise. You can know, however, that there will be complications.

When I find babies surviving and even thriving, I feel at once relieved for their prognosis and knocked down to the floor, wanting to ask if that would have been Lorenzo surviving and even thriving. But I am so sorry to say that it’s much more often that I find a story where a baby may be surviving, but is far from thriving. That is the reality of HLHS and what is required to help these babies live to fight another day. These babies are and always will be my heroes, as are their devoted parents, as is every professional caretaker who discovers why fluid has built up or who inserts an IV with as little pain as possible or who simply makes another night in the hospital more comfortable.

 

I know from my searching that some of these babies are big kids now, practicing karate and heading off to kindergarten. I know that is the focused hope for every HLHS parent, even though the risk factors are still there for the big kids, too. Some of these babies didn’t survive the riskiest first open-heart surgery (The Norwood Procedure, usually done at around one week old). Others did and recovered in the hospital for a couple of months and even went home for a time before returning for the second surgery (the Bidirectional Glenn Procedure, the first of a two-part palliative operation). Some never went home between their first and second surgeries. Some never went home after receiving a heart transplant. Some have had to move around the country with their families in order to receive the best care or the particular kind of procedure their compromised body has come to require.

Even a new heart is not a guarantee for a life with few guarantees from the start. Heavy-duty anti-rejection medications must be taken, infections must be watched for, and even a new heart will only last so long. Without a transplant, a few of the complications include: blood clots (to the extent that central lines, which are requisites for the many open-heart surgeries these babies need, can no longer be inserted), pulmonary embolism or stroke as a result of the clotting, infection or sepsis, developmental delays due to brain and nervous system function, fluid build-up in the abdomen, lungs, and elsewhere (requiring drainage, chest tubes, and diuretics), difficulty feeding (requiring a feeding tube), difficulty breathing (requiring intubation, oxygen ventilation, or even a tracheotomy), and sudden death (which is always listed last in these long lists of complications and always socks me in the gut no matter how many times I read it). The fixes seem to lead to complications of their own: inadequate blood flow to organs and tissues during surgery, damaged vocal chords due to the intubation, fistulas due to the tracheotomy, bruising from all the poking and prodding, side effects from the medication needed to treat all of this, not to mention the general pain and discomfort these innocent little bodies endure.

 

I’m sure these families would say that none of this compares to the chance to save their son or daughter’s life. Every year, 960 families have to determine and follow what their compassion, beliefs, and instinct to protect compel of them, and that search does not yield the same path for each of us. I don’t know these parents and their babies, but I pray for them and I am grateful they are sharing their stories, which prove we are not alone, no matter how isolated our grief or circumstance may make us feel. I check in (daily in some cases) to see how these babies are progressing or if there has been another set back, and to understand how their incredible parents are managing, often with older children to look after as well. I linked to them so you might also support their stories and have a clearer idea of what our son would have been up against, what our lives might have looked like had we elected to take another path, and to where the deep cracks in our hearts would have continued to extend.

As I said last time, I have a kind of peace in my own heart knowing Ryan and I did what we believed our only son and his only heart needed us to do. I have moments of solace amidst the anguish. I still HOPE. While that may all be true at certain points each day, even the right choice, no matter what that ends up being for each family, can also feel very wrong. Similarly, I wouldn’t have been able to watch my son suffer such relentless complications and not feel that something was still very wrong, even if the decision to do so felt right. That feeling of the right in the wrong and the wrong in the right is another reality of HLHS and another reason why I find these stories. If anything, they provide an opportunity to refocus my prayers to those most in need. That, at least, always feels right.