By Lindsey Bobbitt
Mommy to Woodson
Hypoplastic Left Heart Syndrome; Heart Transplant
Born September 2022
Our heart journey began in May 2022 at our anatomy scan. Woodson is our rainbow baby after losing our second daughter in August 2021 during the second trimester. I think I just assumed the pregnancy with Woodson would be fine because we had just endured the heartache of losing our Olivia… kind of like trauma karma or God’s way of balancing our pain with joy? Boy, was I wrong. Hearing Woodson’s diagnosis was hypoplastic left heart syndrome (HLHS) was especially difficult because I had a cousin who was born with HLHS and passed shortly after birth, so I had some preconceived notions affecting my perception. He and I would be the same age if the medical advancements available now were more accessible then.
So much uncertainty came with the diagnosis. Woodson would need to be born in St. Louis and stay there until stable – how long would we be in St. Louis? How could we be present for both our older child at home and our hospitalized son? What about our jobs? Both my husband and I are planners and like to map out as many variables as possible. All of our prenatal visits and planning meetings were so focused on the three surgeries he would need, with transplant rarely mentioned at all. Our experiences in the past 2.5 years have made it painfully obvious at how little we actually control in this life.
Woodson’s birth story is something that I can’t really talk about yet. One of the medications they gave me during labor for eclampsia affected Woodson’s ability to breathe. He was dark purple when he was born and had to be taken immediately and intubated. I was able to touch his leg for one moment before the nurse whirled him to the corner where a team of 20+ attended to him. I was able to hold his foot for about 2 minutes from the incubator, once his breathing was supported and he returned to the expected color. Woodson and dad then made the trip across the hospital to the cardiac ICU. I stayed in the delivery room alone for the next few hours while the nurse prepped me for transfer to a recovery room. Going from constant monitoring by a huge medical team for days and 40 or so providers in the delivery room, to being alone 30 minutes after everything we experienced during his birth was extremely jarring. That loneliness was not something I had prepared for in the slightest and I consider it one of the hardest moments of my life.
We hoped the plan would stick and that Woodson would receive the typical surgeries that a single-ventricle person receives, be in the hospital for a month post-op, then go home for a few months to help him grow as much as possible before the next open-heart surgery. Within a week of being born, however, it was evident that Woodson’s heart was not functioning well enough to sustain him, even with the usual course of surgeries. A “straight forward” Cath lab procedure at 9 days old turned into our first code blue and the first time we really even talked about a heart transplant with his team. Woodson came back to his room on ECMO with a brain bleed, having suffered a stroke, having seizures, and in the more advanced stages of heart failure. This was also the first time I understood what I had been told countless times – there is a reason heart kids are called warriors. They fight harder than anyone and they shock everyone with their vice grip on life.
Living the hospital life is exhausting. Answering questions about your child that most people just cannot understand is exhausting. Hospital life rips away your old normal, either temporarily or permanently. There are many days you don’t have the opportunity or mental capacity to eat, sleep, or shower let alone think about something like family photos in the hospital. The logistics of that alone were more than enough to deter me from even asking. Then there is On Angels’ Wings. For us, OAW photos were a lifeline back to some sense of what we would typically do to document the tender moments with our baby. OAW understands the struggles, burnout, exhaustion, and very specific circumstances that medical families face and make it easier for us to create memories. They see that we need cherished experiences regardless of our situation, yet we may not have the capacity to even think about it, and they take the burden off of us to deliver those memories.
I remember being so excited that I would be on maternity leave during the fall and holiday months. That even though he would be a medically fragile kid recovering from major open-heart surgery, we would still spend mild autumn afternoons enjoying our 4 acres and going on walks to look at leaves. I dreamt that he would wear his Bluejays onesie and attend his cousin’s football games, just like his sister did at that age. I imagined us rocking in his great great grandparents’ 100-year-old rocking chair, the same one I rocked his sister in, by his bedroom window and watching the deer eat persimmons from the tree in our front yard. When rocking for hours at the hospital, I would sometimes tune out the beeps, tubes, and wires to imagine we were rocking in that chair at home. We had to learn to appreciate every moment our son was alive while grieving the loss of experiences we did not get.
For 235 days, my husband and I split our time between St. Louis and our hometown of Nixa, MO. One of us would spend Monday through Friday with Woodson in St. Louis, while the other spend those days in Nixa with our daughter. Then the parent and big sister would head to St. Louis for the weekend, and on Sunday, we’d swap which parent was going where. We put roughly 50,000 miles on our vehicles, and our daughter was along for the ride for 20,000 of those miles. We spent 7 holidays and mine and my husband’s birthdays in the hospital. It was one of the hardest seasons of our lives, filled with countless Facetime calls and nights apart.
Transplant was an unexpected route for us, but the only path we had to be able to bring Woodson home alive once he showed us his heart couldn’t support him. Once Woodson unexpectedly came back to us after his first surgery on ECMO, our care team talked in-depth with us about transplant and how we would support him while we waited for a new heart with a Ventricular Assist Device (VAD). The specific type of VAD that Woodson was on is essentially an external mechanical heart that does the work when his little heart couldn’t. It’s often referred to as a bridge to transplant, and it can come with risks, especially the longer it’s used. Fortunately, Woodson only needed a pacemaker for a few months while on the VAD.
Diaper changes, getting out of bed, going for walks were all tricky with the VAD, requiring two nurses and a parent to wrangle him and all of the equipment: the VAD cart, central lines with meds, IV pumps, feeding tubes, and his vitals monitor.
The first image (not taken by On Angels’ Wings) was Woodson’s first time outside when he was 2 months old. The second (also not taken by OAW) is a partial view of his VAD.
On March 13, 2023 — at 6 months old — Woodson received his donor heart! Getting “the call” was intense. We were obviously excited for him, but also heartbroken by what that meant for his donor and donor’s family. Their immeasurable loss was wrapped as the most precious gift for us. He was in surgery for 16 hours. All three pediatric cardiothoracic surgeons at St. Louis Children’s worked on him during his surgery. That night, while we had tears of joy and hope streaking down our cheeks, there were tears of grief for another mom and dad. We have since received a letter from our donor’s mom and several pictures. This beautiful angel’s picture is hung in Woodson’s room and we talk to our angel every day.
On April 4th, we were locally discharged — meaning we had to stay in St. Louis — to the Mid-American Transplant apartments, which were about 5 minutes from the hospital, and the first time Woodson ever left the hospital. On April 25th, we finally got to take Woodson home at 8 months old. It was the first time we were all home together since August 24, 2022.
Two years later, we are rocking in that rocking chair watching the deer and checking out the leaves. Two years later, we are wearing our matching Bluejay shirts and going to more football games. Our journey has never been what we pictured it would be, but we appreciate it nonetheless because it has brought us our sweet boy and made us so strong as a family.
We are home, happy, and tired. Life with two young kids can be a challenge for everyone and parenting can be tough and wonderful, regardless of a medical diagnosis. Woodson’s heart is doing well and he’s working so hard in all of his therapies. We found out in May 2023 that Woodson has a progressive and relatively unstudied vein disease. This has been a bit of a dark cloud for us. Treatments are new and few, but we trust our pulmonary hypertension cardiologist at Children’s. We have some really hard days, especially after visits check the progression of Woodson’s vein disease. We travel frequently for appointments and still spend some time apart because of that, but overall we try to be as joyful as possible whenever possible. There is a lot for which we are grateful: two beautiful children, we support one another as spouses and partners, we have faith in the Lord’s plan for us, we have a great medical team, and as always, our donor.
Our lives are nothing like they used to be, but we are more than okay with that. We have our beautiful son. We have watched our daughter become the best big sister with a huge heart. She is a true caregiver and cares deeply for those around her. We have learned a lot about ourselves and have been blessed with perspective of what matters most to us. The journey this diagnosis has taken us on has given us the courage to fight for what is most important to us and let go of what is not. We have had to learn to navigate a lot of PTSD for both ourselves and Woodson and process our survivor’s guilt because he is living a full life outside the hospital while some have not or will not get that chance. While still pregnant, I met an incredible counselor and therapist through the heart center. She also happens to be a heart mom and she has helped more than I can say. I recommend therapy for your mental health to everyone!
There are so many unknowns with Woodson’s vein disease and advancements in transplant medicine are very much needed, but we simply want peace, happiness, and health for our family for as long as possible. In many ways, this experience has broken parts of my heart, but some of those parts were remade even stronger, more tender, and with a deep appreciation for the truth that life is so fragile. We want to experience as much joy as we can as a family. We want to fill Woodson’s days with laughter, new experiences, and fun. We owe it to ourselves and our donor to live in joy, peace, and leave the world better than we found it. We hope to meet our donor’s family someday, but in the meantime, we do our best to live lives worthy of our donor’s gift.
OAW continues to support us in a very tangible way by capturing memories for us and giving us a local medical family community. I have attended a couple of the heart mom support meetings. It has been so nice to connect with people locally who just GET it. I would tell someone going through a similar experience, without hesitation, to call OAW. Pictures may not seem like something you should spend limited energy doing when you are going through hell, but the photos you receive will be beyond precious to you. As intense as this sounds, documenting the hard times can help you appreciate the journey your child and family have been on and if the worst were to happen, you’ll cherish every memory of your child.
