The Start of a New Journey – Lillian’s Transplant and New Heart

The day that felt like it would never come finally has. At 12:57 AM on Thursday, March 24th, we got a call we had been expecting for four months. On the line was Kelly, one of Children’s three transplant coordinators telling us that they had accepted a donor, the first stage in the donor process. (A donation offer can be rejected at 3 stages, the initial offering (the hospital does not inform us when they reject these), when the surgeon's arrive to retrieve the organ and again before they do the transplant.) Kathryn and I were I don’t think I’ve ever driven so fast in my life, but we made the best time to the hospital ever after dropping Annabelle off at Grandma's.

Walking into the hospital at 1 in the morning was a bit surreal as the dead quiet presented a stark contrast to the hustle and bustle that we're used to seeing at Children's. Lillian's room was like this at first, but only for a little while as the staff quickly started preparing for the transplant. Lillian's night nurse was busy with paperwork, and two other nurses were busy changing her pumps removing her formula and adding fluids, as well as drawing fresh labs to check Lillian's blood for any changes.

We were informed that Lillian would be taken back for the transplant at around 7:00 AM. While we continued to prepare, we gave Lillian her first dose of Cyclosporine, the main anti-rejection medicine she will be on. Since Lillian was wide awake and well aware that something was going it, we decided to make the best of the situation and play with her for a bit, although we were able to get her to fall back asleep and get some much needed rest before the surgery. 

While Lillian slept, it was time to clean up Lillian's room, which had functionally become our home during our time waiting. This turned into quite the ordeal, and we walked out with quite the caravan. 

The time for transplant was getting closer and closer! Because of the rejection meds we had given Lillian earlier (azathioprine in particular), Lillian had finally earned her hazardous drug sticker, something that's actually highly desired by those waiting for transplants.

 

Lillian was pretty much ready too, having been given an extra Chlorhexidine bath (she has been given these daily for the past four months as one of our methods of fighting off the risk of infection) and fancy surgical scrubs. 

As I mentioned earlier, there are 3 stages during the donation process where the offer can be rejection and we keep on waiting. By getting the call at 1 AM, we had already passed stage 1, but I consider stage 2 to be the most risky, as this is when the surgeon retrieving the organ actually can see it and make a much more informed decision as to if the organ would work. By the time 7 AM had rolled around we still didn't have the confirmation that we were taking the organ at stage 2, although we did know that we had an hour and a half slip in schedule to around 8:30 or 9:00 AM (aside: I should mention that these aren't official stages, but milestones that I thought worth noting as they mean the difference between a continued wait and a new heart). But even without this information it was still time to prep Lillian for surgery, so we left our room and made our way to the OR.

On our way to the OR

Once at the OR triage area, they did the pre-surgical triage and we went over the consent forms for the surgery with Dr. Michael McMullan, who would be the surgeon performing the transplant along with Dr. Gordon Cohen. If the first name sounds familiar, it's because Dr. McMullan was also the surgeon who performed Lillian's Norwood procedure. Dr. Lester Permut was the surgeon assigned to retrieve the donor heart and was not able to participate in the surgery itself for legal and ethical reasons. Understanding that it would still be a while before they began to return to the hospital with the donated organ, we signed the consent forms and they took Lillian back to prep her for the surgery. 

Asleep even going into surgery.

Since we knew Lillian would be in surgery for several hours, Kathryn left to be with Annabelle while I waited at the hospital, hoping to catch a glimpse of Lillian's heart arriving. I spent two and a half hours waiting for the expected helicopter to come, only to discover in the end that it would not be arriving via that method. Right around noon I was informed that Lillian had been on bypass for 10 minutes, indicating that the heart was either in house or very close. Sure enough, while on this call, I witnessed two ambulances arrive at the ER, and I can only assume that one contained her new heart. 

The view I spent hours in fruitless search of Lillian's new heart

Once Lillian was on bypass, the surgery proceeded quickly. We were informed at around 12:40 PM that Lillian's new heart was in her chest and they were beginning to suture the veins and arteries to it. An hour after that, they had finished the connections and had taken her off of bypass, closing her chest shortly afterwards. Within a half hour, we would be able to talk to Dr. McMullan and discover how the surgery went. 

When Dr. McMullan was able to meet us, he seemed optimistic and upbeat about the surgery. According to Dr. McMullan, Lillian received almost a perfect heart aside from two minor issues (discussed in a bit). The heart was a perfect blood type match and was reportedly beating vigorously, a very good sign. In terms of what was wrong with the heart we noticed two issues: a rhythm issue and a leaky valve issue. The first issue with Lillian's new heart is called 2nd degree heart block, in which electrical pulses in the atria are not properly sent to the ventricles. In more basic terms this means that her heart wasn't beating together as one cohesive unit. While this sounds relatively serious, it is an extremely common issue in transplants, and usually comes back. The second issue with her new heart concerned a leaky Tricupsid valve. While we are unsure of the origins of this issue, we do know that it is also a commonly seen condition in newly transplanted hearts. Our initial suspicion is that it is caused by high blood pressure in her lungs from being intubated. If it disappears once Lillian is extubated, then we will know that was the cause. Alternatively, she could genuinely have a valvar issue with her new heart, but it is an extremely minor and common issue that can be fixed easily with a small surgery if need be.

Lillian's new heart was retrieved at 8:18 AM and placed in Lillian at 12:53. It was ischemic for just over 4 1/2 hours. As the target is normally 4 hours, this is a great result, with only a minimal amount of time that Lillian's new heart was not beating.

Aside from these two issues (which again, are commonly seen after transplant and may go away independently), Lillian has a near perfect heart. It is strong, although we will need a couple more days to make sure it is properly relaxing and contracting. Dr. McMullan also informed us that due to the rhythm issue that Lillian had pacing wires placed on her heart (basically an external pacemaker) to ensure that it was working properly.

Our first view of Lillian after surgery

At 3:20 we were finally able to go back and see Lillian. Despite the multitude of lines, pumps, drainage tubes and of course a fresh chest scar, Lillian looked simply fantastic for having had an entire organ swapped only hours ago. She was much pinker than before the surgery and looked amazing. Being in the room looking at Lillian was indescribable. The feeling of relief for the wait being over was so over powering all I could do was just stand and watch her, grateful that she finally had a real chance at life.

At the same time, the whole day I had been experiencing extreme sorrow at the idea of another family losing their child, and seeing Lillian whole again was almost too much to bear in that regard. I think it will take some time to properly organize my thoughts about our donor, but I don't think I will ever be able to adequately express my gratitude for this amazing gift. Organ donation is a selfless act, snatching despair and death from those on the brink. Knowing the sorrow that the donor family feels only serves to illustrate just how feeble attempts to properly express our gratitude are. Today, we received the best gift anyone could ever give to us: a second chance at life for Lillian and re-establishment of our hope of having a complete family again. I can never properly express my thanks.

Even with this amazing gift, we still have a long road ahead of us. The last four months have been excruciating, but this next month promises to be more so, with unforeseen pitfalls and setbacks. Still it feels proper to look back and reflect on the last four months. As difficult as the wait has been, I would never trade the experience as it has given me not only more time to spend with Lillian than we ever should have had in the first place, but also an invaluable new perspective on what is truly important in life and relationships with people, specifically Children's nurses and doctors who have always been there for us when we needed them. We have gotten along great with Children's staff and would not have gotten through this experience without them and their support. Whether it is a previous nurse who frequently checks on Lillian on her way to Starbucks, a doctor who is always willing to have bizarre conversations and answer ludicrous questions or a nurse that Lillian loves so much that Lillian bursts into laughter whenever this nurse is spotted (to mention only a few); your patience, kindness and hospitality will never be forgotten. Every one of you has turned what should be a hellish experience into something that, while difficult, was ultimately personally enriching and even enjoyable at times. It has meant the world to us, and we hope you'll stick around with us as we continue to fight for Lillian's life.

Godspeed Lillian, we're only just beginning.