Where it all Began

“Your baby has Hypoplastic Left Heart Syndrome, and they will require 3 surgeries at least by the age of 3 if they survive their birth.” And then my ears rang, the room went blurry and I could only hear my heart pounding in my own chest. 

I was 21 weeks pregnant, with my first baby. No one ever told me that things go wrong in this phase. Yes, I heard miscarriage, I heard that at 10-12 weeks you have a blood test and that rules out all potential concerns for an unhealthy baby. I thought we were in the clear. Mind you we were also in the thick of covid. This was the first appointment that my husband was allowed to be in, only because there was a concern with Henry’s heart. Other than this appointment, I had been alone, every scan, every doctor appointment, by myself. 

After 2 hours of learning about HLHS, the surgeries, the life expectancy, heart transplant that will eventually happen if he survives and then the most shocking choice we were left with, do we want to continue on with the pregnancy? Now, in the moment I was so taken back by it, being that I was never going to even consider it. I was keeping him, giving him the chance to live and show us what life he was going to live, whether that was short or long. But, being removed years from that moment now, I understand and respect that option now more than ever.

My husband and I went home, spoke with our families on the information we were just given and tried to digest all that had just unfolded. We spent the next few weeks researching outcomes and scouring social media for stories of hope. For that one piece that would give us the push to keep going. That is when we stumbled on Greg Olsen’s page, the former Tight End from the Carolina Panthers whose son had HLHS and they had started a foundation called the Heartest Yard. One that raises funds for research for CHD in the Carolina Community. We found our hope.

In that moment, we learned about their son TJ, one of their twins they had that was born with the same heart condition that Henry would be born with. He was through his first 2 surgeries and living life, doing well. We both felt this hope that Henry could do the same. 

Henry was born November 2020, after 33 hours of labor he came into this world by emergency C section. He was whisked away by a team of nurses and doctors to the NICU to start life saving medications and procedures. I do think one moment I was prepared for was this one, the loneliness that came with being in the OR with just a medical team while my husband was with our son and watching them tend to Henry. While I was in recovery, he was watching them stabilize our first son in a room full of small, mighty warriors all fighting different battles. 

Henry spent less than 24 hours in the NICU, before he was determined too critical to be there and was moved to the CVICU. The team felt it was much safer for him to be monitored under their watch ahead of his first open heart surgery than those in the NICU. The goal was to get him to a week old before he had his Norwood procedure, the first of the 3 planned palliative surgeries that HLHS kids have in their journey. This being the goal because it allows the body some rest after the trauma of delivery, some time to eat and bond with your parents. After all, it is open heart surgery and like everything else, there are risks. 

The day before Thanksgiving 2020 we handed off our 6 day old baby boy to a team we barely knew to fix his half a heart to hopefully make it function just enough to its next surgery. Enough for him to come home and grow a little, get a little stronger, meet his family, spend his first Christmas not in a hospital. One thing that you sign up for as a heart family, especially one that is in the category of complex heart disease as we are, is that you are signing up for multiple surgeries and usually within that first year of their life. You are hoping, if you’re lucky it’s only two. But, in life, nothing is guaranteed and everything comes with complications and we learned very quickly Henry was going to do everything on his own terms. 

The Norwood Procedure took all day, Henry came back to his room with an open chest, which for the first time was a very jarring experience. Seeing a heart beat from the outside of the body is not something I advise everyone should see in their life, especially not one of your children. There are moments in your life that shape and change you, looking back I know that was one that humbled both me and my husband. 

The amount of wires, tubes, machines, beeps, medications, lights and chaos that surrounded this 8 lb baby was insane. The PTSD that haunts me to this day when I hear any of these sounds is one most heart parents bond over. The math, the minds, the amount of knowledge that went into every single heartbeat that this infant had in the moments after this surgery was incredible. The 24-48 hours after every open heart surgery are the most critical. It is usually when most things go wrong, when surgeons have to go back in, when the bleeding is still happening and when patients are the most unstable. At this point, we were running on no sleep, caffeine and hope that Henry would just make it through the night. Mind you, I'm still recovering from a traumatic delivery and I myself was just discharged from the hospital. We decided to go back to the apartment we rented across the street from the hospital to get a few hours of rest, knowing that if anything came up, the team would call us and we could be there in 2 minutes. 

Within a few days, tubes and wires started to slowly come off and Henry was starting to move. They would allow him to wake up, start to give him little amounts of breastmilk through a NG tube in his nose and start to trial him off his breathing tube that was in his mouth. All signs pointing towards the heart surgery they just did and the new medications he was on were working. Within 2 weeks we were moved to the stepdown unit, one step closer to going home. This is where we learned how to give medication to Henry, how to feed him, the cues when his heart was tiring out and how to work a pump on his NG tube. All things as new parents that felt so overwhelming. I remember turning to my husband at one point and being so frustrated because we had friends that were having healthy babies, and within days they were going home, breastfeeding them, sleeping in their own beds. No monitors, no doctors with spreadsheets, numbers, medications, surgeries and the words “when he is listed for transplant” running through your mind every other minute. Some days felt really lonely, not to mention it was a global pandemic, which at that time if children like Henry got COVID it was a death sentence.

After 28 days, we went home. Which to many was a huge surprise. Henry was eating great, taking his medications well and overall handling the life of a single ventricle baby better than expected. We would have appointments 3 times a week and were required by the team to keep a log of his medication doses, how much he was taking by mouth, his oxygen saturations, his heart rates, how many wet diapers and how long he was sleeping. They would call us almost everyday and depending on those calls and appointments those weeks would determine the next week for frequency of visits and calls.

If I told you I had postpartum depression and anxiety would you be shocked? 

My husband and our families were thrilled to be home for the holidays, it was such a sweet moment in time. Everyone quarantined to meet Henry, wore masks to hold him and took the extra care to really be around such a special little boy. My mom moved in with us, learned his schedule, how to pull meds to be of assistance however she could. My mother in law would have us leave our laundry out and she would come pick it up, clean it, return it folded and bring food, come clean whenever and take care of our dog for us. We had neighbors that looked out for us, started a meal train to make sure we were fed, we had friends that always made sure we had food and gift cards to get coffee when we were at the hospital or going to appointments. 

Henry was home for about 2 ½ weeks before we had to rush him back to the hospital. Many have heard me talk about how much I hate New Years. It seems to be because the Holiday has never been good, it has been spent in an ER or a hospital room. We rang in 2021 in the ER, hearing our 1 month old baby needed emergency revision surgery on the Norwood he just had. We were devastated. The next day, Henry was rushed to surgery, placed on bypass and repairs were once again made to his tiny heart to save his life. This time it felt like my husband and I had no time to grasp what was happening, but we trusted our team and knew they would fix it. The day was long, he came out yet again with an open chest and we started that clock over. We went through the critical 48 hours, but this time we were seasoned veterans it felt like. We weren't in shock anymore, we weren't listening to doctors talk in rounds and weren’t having to ask follow up questions to our nurse about what it all meant, we knew. We were understanding what numbers on monitors meant, what good ones were, what bad ones were. What pain meds were for and what medications were for what in the body. All of sudden we were in the step down unit again and it was 27 days later and we were going home. The second time around we blinked and it was over.

Trauma has a weird way of making you block things out and then when you have to do it again you just man up and do it.

This time we got home and life finally felt stable. We were able to space out appointments to once a week and calls to every other day. We could get Henry into Physical Therapy. He was starting to finally get caught up. He came off his NG tube completely, was taking all his formula by mouth, all his medication by mouth. He was thriving. But like I have said, Henry always did things in his own fashion, when he was scheduled to go in for his pre surgery catheterization for his next planned surgery, the night before he looked off to me, something didn't look right. We called the team and they asked us to take him to the ER. Once we were there, he was immediately moved to the CVICU, his heart was once again quickly failing. For a baby that was thriving, you would have never known his heart was giving out. Again, the next day our sweet baby went for his third open heart surgery in 4 months. This time under a new surgeon, who said he wasn’t going to put a bandaid on a bullet hole, but fix the problem once and for all. After 16 hours, Henry came out on ECMO, a form of life support. His little body was tired. We were assured it was a form of rest to allow his body to recover for maybe 2 days. Unfortunately, when the team tried to get Henry to come off ECMO his blood pressure dropped and it was showing he may never be able to come off. We were brought into a conference room, surrounded by many people that had been working with our son for the last 4 months. Opinions, many different ones and there were two women that were in the corner that we didn’t know, that were the loudest. Looking back now, I have since apologized to them because I was so resistant to them. But they demanded that Henry be listed for Heart Transplant and moved to a facility that could transplant because oh kicker, the hospital our son was sitting on life support at as of that week was no longer allowed to do pediatric heart transplants. Talk about being kicked while you're down.

When my husband and I heard this we both just stared blankly. I got that feeling in my ears where they rang again and all I could hear was my own heartbeat in my chest. I remember just asking everyone but our trusted doctors we had worked with the most stay in the room. It was the people we leaned on, they would be honest. Everyone else left and I remember very bluntly saying, do we do this and where? 

Those doctors are the reason we stand where we stand today. My husband and I could have walked away at that moment. We could have just been done and said enough, but we knew and those men knew Henry wasn’t done yet. 

To get to another facility is not the easiest, it takes a lot of paperwork and applying. So while we were submitting to all these hospitals around the country and the head of transplant was calling for them to take Henry, the team was prepping to take Henry back to the OR to try one last time to get him off ECMO. The hope was getting his chest cleaned out, he would be able to come off. One thing about transferring anyone on ECMO is it is very high risk and a lot can go wrong. Knowing that Henry was going to be life flighted, getting him off was going to be the safest option. 

As many of you that have followed our journey from the start, you know we would ask all of our friends and family to light candles on surgery days. It was a form of unity for us to all be in prayer over Henry. A wave of light the team and surgeons would repair him and he would come out okay. When Henry went back for this chest clean out, I remember asking our family and friends to please light a candle, to lift Henry and his medical team up, for this to work and for him to come off so we could safely transport him. We knew that the chances of him coming off were slim to none, the surgeon was confident, but he told us as sick as Henry was that he may just need ECMO until he gets a new heart. 

We sat in his CVICU room and waited. This time, updates weren’t coming from nurses. They were coming right from an ICU attending. The one that we have trusted all this time, it was make or break and they knew it. After 45 minutes, he came in and said “I don’t think I believe this, but Henry is off ECMO.” “Hang on, I have to go see this for myself, I'll be right back.” The shock and joy that flooded my body is indescribable. I held my breath for what felt like an hour, it was no more than 5 minutes later and he came running back in and said “HES OFF ECMO.” “HE’S BEEN OFF FOR 30 MINUTES.” We jumped, we cried, we all hugged, that was the day that candles became our “thing.” It was the day that Jersey Mikes became the only sandwich we ordered on surgery days, and we order the same sandwiches every time. It was a miracle. The surgeon never admitted this directly to us, but a birdie in the OR told us that when he successfully got Henry off ECMO and he held his saturations, the surgeon was jumping up and down, himself celebrating in pure joy that he saved this little boy. I know that this surgeon knows who he is and is out there somewhere, we see you, we love you and appreciate what you did for our boy. 

The days after Henry coming off ECMO, he actually was recovering beautifully. He started to wake up. He was still in critical condition and we were still applying to be transferred to another facility for transplant. There was a brief conversation about him having the Glenn Surgery, the next surgery in the planned HLHS surgery, but we ultimately made the call that if he was going to have that, it was going to be at the next hospital that was also able to do a heart transplant.

We sent Henry’s records to many institutions across the country, we didn’t care where we had to move to in order to make sure the care he got was the best. Almost every single one turned him down. He was too sick, too high risk and in their words “never make it to transplant anyway.” The one option we had was to go Mayo Clinic in Rochester Minnesota, which to most you would think is amazing, but at that time the pediatric heart transplant program was just starting and Henry would have been one of their first cases and their youngest. The transplant director at our current hospital had one more call she wanted to make to a friend at Children's Wisconsin in Milwaukee. Their program was known for taking on sicker children, it was a longer standing and successful program and they were well known for their HLHS to transplant success rates. The glimmer of hope felt like it was coming back. 

Within a day we had word that the team at Children’s Wisconsin would take Henry. Milwaukee only being 5 hours from home was a lot better than almost everywhere else we were looking. Not to mention, the belief this team had in our little boy.

The week leading up to getting Henry to Milwaukee was a whirlwind, we couldn’t be interviewed, listed for heart transplant until we were physically in Milwaukee, so we had to make sure that we got Henry there alive first. The chances of him dying in transit was about 60% and we were trying to decide if it was safer to fly him or go by ambulance.

With insurance and a team of doctors and one early morning in May of 2021, our little boy was taken via life flight from Minneapolis Minnesota to Milwaukee Wisconsin. I remember walking in his ICU that morning and his primary nurse looking at me and all the people surrounding his bed saying its go time and the attending doctor saying “you can’t go on the flight, you and Barret need to get in your car and get to Milwaukee as fast as you can, I have already called them and let them know you are on your way.” At this rate we were trying to beat our son's private plane to Milwaukee. 

I didn’t even get to say goodbye to any doctors or nurses, no thank you’s or hugs to the people who did all they could to save Henry’s life. Off we went to the next phase of this journey and where we would spend some of the darkest days of our life, but what ultimately led us to the most incredible people, beautiful moments and the story of Henry’s 116 days on the Heart Transplant List.