“You are so lucky you aren’t single ventricle, because those kids have such low quality of life, and honestly, if you were single ventricle, I’d have to tell you to expect to bury her by age five.” This is what a doctor in Dallas said to me after misdiagnosing Sunley (she thought Sunley was biventricular with DORV and mitral atresia) while I was pregnant. She called two days later, crying, and telling me that actually Sunley is single ventricle.

But here we are, four years later. My daughter has a wonderful quality of life — yes, even with 3 open heart surgeries. She is spunky and happy; So much so, that she has earned the nickname of “Firecracker” with various biker groups in Oklahoma and Texas. She does things like loudly yell to our friends as she’s leaving church, “So long, suckers!” She is an unstoppable force with a completely magnetic personality. And she is doing more than just barely surviving.

The things the Dallas cardiologist said to me have been described as “medical bogus.” That description of single ventricle life is simply untrue, but those words will haunt me until Sunley buries me. Her surgeries fall into the category of palliative care, yes, but she does have a good chance to lead a very long, and very good life (and spoiler alert: even if it is shorter, it has already been enough good worth fighting for).

{{Tangent: If you’d like to help many kids and adults like Sunley, check out our nonprofit here. You can order shirts, sign up for a lemonade stand, or simply make a donation.}}

Today we ended our ninth (I think?) hospital admission — our seventh at Texas Children’s, and quite possibly our last one for a very, very long time. We took lots of pictures and videos, which already feel like too little, and walked out of those doors like we’ve done so many times before — we are taking her home. Everything was bittersweet — will we see Dr. Heinle again? Will we ever see some of this staff that completely changed our world? Our room has probably already been filled by the next heart warrior hoping to go home soon. If we were still there, I’d be curled up in the corner windowsill right about now, watching the sun set and hoping not to be interrupted by evening vitals and meds. But instead I’m laying in bed in our temporary home here, and Sunley is asleep next to me, our 3 other kids in the next room. We’ve got our meds schedule taped to the fridge, syringes cleaned and ready to go for the morning.

When Dad pulled up in our van to pick us up, I saw that it was still decorated from our trip here, and a few tears that have been hiding somewhere in my face for the last four years leaked out. This part is over, and it was so hard and wonderful. Sunley is not cured, and we don’t know how long her health will be good, but this very long first chapter is closed. She is one of the single ventricle babies that survived. And we are taking her home.

Sunley is certainly still recovering, and we have follow up appointments to continue tweaking her medications. She is on lasix, diuril, spironolactone, potassium, famotidine, aspirin, and of course tylenol/motrin, as well as her regular daily vitamins. We are measuring every sip of fluid (including things like ice cream, jello, juice fruits like oranges, etc). She is on complete sternal precautions, which is way more limiting than when she was a baby, and her immune system is still pretty delicate for now. They’ll do bloodwork and X-ray before her surgery consult on Monday, and we’ll be continuing to care for and monitor her wounds (incision and 3 chest tube closures). We are fully still in recovery mode, but we hope to finish this part out of the hospital.

Derek and I are exhausted physically, mentally, emotionally, but we are spiritually very, very full. And that has a LOT to do with the support of absolutely everyone around us, and the compassion and commitment from the staff at TCH.

I wrote a little note to hopefully be shared around the unit, thanking anyone who has ever worked on Sunley. It won’t possibly be seen by all of her people, and it was completely impossible to actually record my feelings about everything. I , like, super toned it down, lest I sound just completely dramatic. I printed off a few copies and gave them to a few different departments. We are deeply grateful to everyone there, and while I hope we are never inpatient that often again, I have such happy and full memories in that building.

I know that Sunley is not actually cured, and this journey is never really over, but being through the Fontan now certainly feels at the very least like an end of a lengthy chapter, and it felt appropriate to close it out with some sort of thank you to the people who have joined this journey with us.
I asked God for a miracle, and instead He gave me a story. In December of 2017, just days before Christmas, our 20 week ultrasound did not go as we had hoped. So we prayed for a miracle. A rollercoaster from hell and 4 diagnoses later, we finally landed on the diagnosis of a rare version of Hypoplastic Right Heart Syndrome. The version my Sunley has is so rare, that I sometimes have to explain it to CICU attendings (if they’re humble enough to ask). We were told by multiple people in the medical field to go to Houston and ask for Dr. Heinle. Since we arrived, we have been truly blown away by the compassion, teamwork, and utter selflessness of the people who work here.
Sunley has received all of her care at Texas Children’s, and Derek and I have learned the ins and outs of this place. We have been admitted to every single cardiac floor, including West Tower, and except the new adult floor. We’ve learned that not every single-ventricle heart kid has the same surgical plan of care, the same medications, or the same outcomes. We’ve built relationships with other heart families here and elsewhere that will last a lifetime. We’ve watched many of them celebrate the victories, while we have watched others bury their babies way too soon — something I was told by another hospital to expect by age five. But there is no hopelessness at TCH, and I don’t understand why that’s the case in so many other places. We’ve learned that the politics in hospitals can be as poisonous as an overdose, and there have been times when we’ve had to remind others that there is no place for it in a children’s hospital. TCH is not perfect, but the individual members of staff that we have interacted with have always given excellent care, above and beyond what is expected. They’ve taken our concerns as parents into account, and have always considered the big picture of quality of life with Sunley.
We are confident that because of the level of care Sunley has received, she will lead a very long life. But even if insidious complications arrive, I know that her quality of life, regardless of the quantity of years, has been and will be better than I could have imagined in the beginning of our diagnosis days. That is heavily in part because of you, the members of Team Sunley.
If you have nursed or cared for her on any one day of her many admissions to TCH, we consider you to be on Team Sunley, and you have been written into her story permanently. We began praying for you long before Sunley was born, and God answered. All the small daily interactions, like gentle hellos from Alice in housekeeping, to the social visits from past doctors and nurses, to being greeted with a smiling, “You’re back!” even after 3 years away — the people who have taken care of my daughter played bigger roles than they can possibly imagine.
I don’t understand why God didn’t heal Sunley the way I wanted, and I never will. Job never got his answer either — just a very comforting, “I am God and you are not.” I don’t know why He allowed us to fall into the world of palliative care when we can’t understand what that means for the future. But I do know that the individual nurses, doctors, and staff at TCH were the answer to our prayers, and I know my life has more meaning, my motherhood has more purpose, because of Hypoplastic Right Heart Syndrome. While I would make Sunley well if I could, I would choose this journey over and over again, if given the choice. You all played a large role in our happiness throughout this journey.
I don’t know what post Fontan life will look like for Sunley, although I hope it is very good for a very long time. I do know that we are in good hands with the team we’ve been adopted into at TCH, and because of this we will be able to handle whatever Fontan challenges we might face. You are what we have prayed for over the last 4 years, and there will never be any way I could adequately thank you.
I asked God for a miracle, and He sent us to you.
-Sunley’s Momma