My personal thoughts, reflections and experiences in becoming an HLHS Father:
I’ll just start by saying, WOW!!! Being someone who is generally pretty observant, patient and analytical, the Congenital Heart Defect (CHD) community, and more specifically, the Hypoplastic Left Heart Syndrome (HLHS) community, is quite a place.
In reflection of almost 2 years now, I’m not sure you can ever fully prepare for the emotional and sometimes even physical events that you experience and in some cases literally run into or get hit with. If you are like myself and my VERY loving and courageous wife, you would be reading and inquiring about as much information as you can regarding HLHS that is sometimes as scary as hell and sometimes very inspirational. No matter how overwhelmed you get, don’t give up hope. There are a lot of VERY PROMISING things going on and A LOT of people and organizations out there VERY WILLING to provide support. The HLHS world does not comprise of a single event but rather many events or what I refer to as a journey. I’m sure I’ll forget some of the specific details, but wanted to put in writing some of the experiences, thoughts and feelings I had from an HLHS father’s perspective.
When my wife was approximately 20 weeks pregnant, we went to an OB appointment where they were documenting all the major measurements they typically do at this stage of the pregnancy. After the ultrasound, we were asked to go to a room and wait for the doctor, as is the normal process. So, we waited, we waited and we waited. Finally, the doctor came in to mention they scheduled us an appointment to see a high-risk doctor that would examine our son’s heart in more detail. When asked why, it was a simple statement that we didn’t get good pictures and they specialize in this process and have better equipment. We thought that was a little odd, but at least for me, I think I blew it off a little or maybe suppressed any deep thoughts to what it could be. A few days later, we had our appointment and learned our son had HLHS and were presented with a not so much optimistic picture. Insert a brick wall and another appointment to see another doctor who specialized specifically in CHDs and HLHS. I again don’t think I digested yet what this truly meant and I guess I kept waiting for the curtain to be pulled back for someone to jump out and say, “sorry, just joking” or, “sorry, we were being cautious, this really isn’t a big deal.” A few days later was the confirmation that our son had HLHS and a little more information about what this meant, not that we came even close to understand it. This is when another brick wall appeared or guess more like a cement wall that knocked us off our feet. The next week for both of us was very emotional where I was shocked, stunned and scared for our son, my wife and how in the world we would get through this.
The next several weeks for me consisted of going with my wife to cardio pediatric visits, listening to what my wife found when researching HLHS, mostly via blogs, and in some cases, hospitals. As the days passed, I like to refer to my state of mind as preparing to go to war! (For the record, I’ve never been to war nor was I or am I in the military and can’t even imagine how difficult it is, so definitely not trying to make light of that responsibility and experience. I only have the utmost respect for all service men and women.) I became very focused and driven to find and create an environment that would be safe and hopefully supportive for our family before, during, and after our son is born. We decided fairly early on we were going to go as a family to wherever we needed to for our son to have the best care he could. This is where the war plan took off for me: which hospital to go to, where to live, how to get there, best environment for each of us, monetary resources, work commitments, etc… No surprise, there wasn’t a handbook out there for us to refer to in assisting us make the needed decisions required nor a single resource to educate us on what we needed to know. It’s a little bit of joke between my wife and I, but I would always joke by asking, “where is our welcome packet,” you know, that showed places to stay, sites to see and a map of the grounds, like at a vacation spot.
I would say for the 2 months prior to our son being born, I continued to become even more focused on implementing our game plan and guess I would even say emotionless, assuming that was the anxiety and adrenaline kicking in. I would also say I became even more protective for my wife’s feelings, both in the moment and in the event things didn’t go well in the upcoming weeks and months. We did not have the typical baby shower parties, became somewhat of hermits and at least I can say, somewhat blunt with people on what could happen in the upcoming days, which made them uncomfortable I suppose. This was more of a protective measure for my wife than myself since right or wrong, at the time I didn’t think it was healthy for her to have people approach and say, "I’m so sorry," like the worst possible scenario already occurred. I also think it is my personality to instinctfully want as much control as possible when things get tough and stressful. Guess a good sports analogy for this is, I want the ball during those tough, intense times rather than to be standing on the sidelines, watching as things unfold.
After relocating near the hospital and then being blessed to see our son be born, the next several weeks were definitely tiring and during certain times, awesome, intense, aggravating, etc… Basically, every emotion imaginable could and in some cases did present itself each day and even hourly. I felt like I was always on guard and ready to attack whatever came in my direction all in the name of keeping my family safe. I also realized very quickly, this was the time that my wife and I could learn a great deal from the awesome doctors and nurses helping our son. Now, in saying this, please don’t get me wrong, it was also during this same time it was reaffirmed to us that we are our son’s best advocate and that there is nothing wrong with questioning the whys, whats and hows of things, with respect of course. We were included to be a part of the team by the doctors and nurses whether intentionally or not. This was a great relief to us since we did not feel like we were in the dark about things and also gave us comfort to know our son was in good hands, not concerned to ask questions about things and would even say, we want to know as much as possible from the worst to the best scenarios. There was a lot of waiting during the days after his first surgery while he rested and recovered, so I spend a lot of time watching the monitors and developing my own trend graph in my head that was a bit of game with the surgeon who performed his first surgery. He’d stop by to say hi and see how things were going and before looking at the charts, would ask me with a smile, "how’s it looking?" I’d play along giving a very brief playful summary ending with, “…but I’m sure you’re looking at a few more things than I am.” This definitely helped me diffuse some anxiety if nothing else for a brief moment in time. However, I mention this since we unfortunately learned after we went home and started the typical pediatrician visits that they don’t specialize in this field, nor know much about it. This is to be expected since HLHS is very rare and very complicated, but at times it was a little frustrating to have to remind medical personnel that using the standard care for the majority of children will not work for HLHS kids, hence the importance of being our child's advocate.
After being discharged for a month and going back to the same hospital for a same day follow-up appointment, I distinctly remember looking at my wife as we walked down the hall with our son and saying, “I feel like we are home.” For many this would seem very odd, but for us, knowing what we’d seen and how the process works, it just seemed natural.
Although this may seem like a rosy picture, it was far from that, and where the saying "living minute by minute" comes from. HLHS kids walk a fine line since there is SO much going on and changing in their little bodies and obviously, we are all human, and humans are trying to fix something we did not make. We are still learning the limitations to and how our bodies adjust to the many procedures required to reconstruct a child’s core anatomy as a result of HLHS. I mention this because we did experience a situation where our son was given CPR one week after his first open-heart surgery after what was referred to as a routine, uncomplicated procedure. I won’t go into details, but some simple things were overlooked and our son suddenly arrested, causing chest compressions to be required to safe his life. No one is real certain what caused our son to react the way he did, which for me only heightened my intensity. Luckily, it did work out, but was not a fun lesson to learn.
After being in the hospital environment for 6 weeks, we were finally headed home as a complete family. For me, I think my anxiety and focus intensified even more at this point. I was blessed to be a part of our son being born and to support him as much as I could through one of the most complicated stages of the HLHS reconstructive process. But now, we are home and I think for me there was a feeling of vulnerability, A LOT of fear and as the days and months went by a feeling of being on a deserted island with no real involvement with the outside world in either direction like we had a contagious life-threatening disease. I don’t think the isolation had as big of a direct impact on me as it did my wife, which ultimately bled over to me, to which I felt a deep sadness and some guilt; however, I felt it was my mission to lead our family through the war zone which included maneuvering through mine fields as we visited the required medical facilities for follow-ups, work, and keeping a safe germ-free zone from others since it was cold/flu/RSV season as well. I can’t say in the past I ever paid much attention to others’ hygiene, current state of health, how germs are and can be spread, etc… In short, I am now an obsessive compulsive hand sanitizer and/or hand washer. Especially when our son was little and I carried him a lot, I would not shake people’s hand during the flu/cold/RSV season. I have no idea where people have been, especially their hands, so to eliminate the risk altogether, I would just avoid the process and apologize later. This caused a lot of stress and anxiety for myself and those around me, mostly my wife. But, for kids with HLHS, catching just the common cold can be life-threatening since what we learned while at the hospital during his first surgery and have since continued to learn more about to this day, the respiratory system plays a huge part of the cardiovascular system, and if issues impede how this system works, it can have a detrimental impact to the heart and supporting arteries and veins. In reflection, I think the time between our son’s first surgery and a short time after his second surgery was as much or at times even more stressful then being at the hospital during a surgery.
After our son’s second surgery, maybe a couple of months, life was attempting to get back to normal, but I think I was fighting it. I still wanted to protect our son from any outside influence that could jeopardize his health. Of course, what is it the flight attendants say before when they demonstrate the safety features of the plane you are on? If we experience a decompression, masks will drop from the ceiling... please put one on yourself before you attempt to take care of your child. Guess that would apply here as well. I need to be in good mental and physical health to support and take care of our son and of course my family. Seems simple enough, right? I also think as the days and months went by, it dawned on me that I was having symptoms of all sorts of negative feelings, but mainly anxiety, fear, depression, intensity, and all the things that typically come along with these feelings, which resulted in me to not be my old self and unfortunately negatively impact those around me, mostly at home. This is where and why I correlate what we’ve experienced as going to war. It has and continues to be, even though I have made some progress, hard to exit this emotional roller coaster including the need to want to feel like you are in control, which you’re not. Definitely was easier for me to get into the mode to emotionally prepare for what we assumed we should be ready for than to decompress. Believe this is just a way for my mind and body to protect me from the severe ups and downs, but at some point I have to get off this ride.
Our son is doing ABSOLUTELY GREAT, which we are all very THANKFUL for and feel very BLESSED. He will still require at least one more surgery, which I’m sure won’t be fun merely because he will be much older and will more understand what is going on. As for my state of mind, I believe I’m in a much better place and get quite the enjoyment watching our son enjoy and experience life. I still get relapses of some of the old feelings, but am doing better learning to manage these feelings and coming to the realization that I won’t be the same person I was prior to learning our son has HLHS. For me, I think the biggest regret I have isn’t with how we supported our son or recruiting help from family to assist with our daughter so we could focus on our son, but rather the regret of not supporting my wife more positively from an emotional perspective. I believe the things I attempted to build around us to prepare for this battle was mostly beneficial; however, in hind sight, I do regret not doing a better job of supporting the emotional aspect of this journey for my friend, my partner, my wife. For that I’m truly sorry!
I realize even more now living through and experiencing this type of world will undoubtedly make an impact on you. The HLSH community is a small one, but a VERY LOVING, UNDERSTANDING and PASSIONATE one from the families to the medical professionals. I have found it is hard for others, family members, friends and co-workers to understand this world, which is to be expected. But we have found there is another family out there that does understand and that can more relate. I think for me, I’m still digesting all that has occurred, hence my analytical personality, and trying to learn what it is I can or should be doing after experiencing this world. It may be as simple as just loving and supporting our son and allowing him to experience as much of a normal life as he can while also loving and supporting my wife and daughter. For now, I’m choosing to LOVE and SUPPORT my family the best I know how, who are the people on this Earth that mean the most to me. If that is all this experience is supposed to teach me, then I ACCEPT it with OPEN ARMS!