In recent weeks and months, we’ve been fairly quiet on social media and on our blog with regard to Savannah’s health. In part, there thankfully hasn’t been a lot to share. We’ve also been trying to just enjoy every moment of life, not thinking about Savannah’s surgery. But all things considered, Savannah is doing very well. Our mission since returning from Boston at the beginning of March has been to get her bigger for surgery. I think we’ve accomplished that mission! Savannah is now pushing 11 kilograms. That’s about 24 pounds for you normal folks.
Unfortunately, we are indeed Boston bound. Savannah will have open heart surgery at Boston Children’s Hospital on Monday, May 18th. For those of you who don’t know, my daughter, Savannah, has an extremely rare collection of birth defects known as Heterotaxy Syndrome. Simply, this is where a baby’s internal organs don’t form in the proper place. This can then lead to the organ not forming properly or just not forming at all. Within Savannah, her spleen, liver, lungs, intestines, kidneys, ears, spinal cord, trachea and heart are all impacted by her Heterotaxy.
The most grave concern right now is Savannah’s heart; thus the name of the blog and the upcoming heart surgery. Savannah’s heart is on the right side of her body, which is the “wrong” side from you normal folks. Other than making surgery a little bit harder, her heart placement isn’t a huge deal. That’s where the good Lord put it, so that’s where it will be! The problems lie more in her heart’s internal structure and the external plumbing. Right now, Savannah has a large hole in between the pumping chambers of her heart. This allows all the oxygen-rich and oxygen-deficient blood to mix inside her heart. It’s rather inefficient!
The normal human heart has two main pumping chambers called ventricles. By God’s grace, Savannah was born with both ventricles in proportional size. When we first learned of Savannah’s heart issues in utero, her left ventricle was hypoplastic or underdeveloped. The miraculous growth and development of her left ventricle meant that she is now a candidate for this surgery called a “bivent.”
“Bi” refers to two, “vent” refers to ventricles. Two ventricles. So what, right? Well in the pediatric cardiology world, this is an important distinction. I’ll explain why in a moment. First, it is important to understand the separate jobs of the two ventricles. The left ventricle pumps oxygen rich blood to the aorta, which carries the blood to the rest of the body through many arteries. The right ventricle pumps the oxygen deficient blood back to the lungs for more oxygen by way of the pulmonary artery. So while they both pump blood, the oxygen content and destination of the blood are very different.
So why do they call this surgery the “bivent?” This name is a specific distinction over those congenital heart disease patients that are single ventricle. This is where heart surgeons take the job of the right ventricle away from the heart and let the blood that’s “coming back for oxygen” flow directly to the lungs. The heart doesn’t pump it there anymore, it just flows there passively. This process is usually done over a series of three open heart surgeries. While three surgeries sounds scary and unfavorable, this type of surgical repair has been around for decades. It’s honestly an “easier” and safer option for a lot of these babies with complex congenital heart disease. Unfortunately, it can lead to many more problems later in life. This is what we’re hoping to minimize by doing the riskier, more involved “bivent” repair now.
The basic gist is: Savannah has two healthy ventricles, so let’s use them! After much deliberation with cardiologists and cardiac surgeons in both Cincinnati and Boston, we’ve made the decision to pursue the “bivent.” This surgery seeks to restore the separation between Savannah’s two ventricles. As you might imagine, it’s far more complicated than just building the wall back up between the two ventricles. Savannah has some major “plumbing” problems involving her valves and those two great arteries – aorta and pulmonary artery. Both of Savannah’s great arteries come off of her right ventricle. This is called Double Outlet Right Ventricle (DORV). Now if you’re still with me from a few paragraphs ago, you’re thinking: “Isn’t the aorta supposed to come off the left ventricle?” Why yes, yes it is! So how is that fixed? There are a couple of options, but it’s ultimately up to Savannah’s surgeon to come up with the best plan. He might completely move the aorta, put a conduit (small tubing) in to carry the blood from the left ventricle to where the aorta is now, baffle it, implement some combination of these, or heaven only knows what else he can do!
Needless to say, there are several layers to this already complicated and risky surgery! The complexity and inherent risk are ultimately the factors that pushed us toward Boston Children’s Hospital. First, BCH is ranked by U.S. News and World Report as the number one hospital in the country for pediatric cardiology. This caught our attention. Secondly, BCH sees a high volume of Heterotaxy cases, to the point that they have actually published their Heterotaxy patient statistics. I’ve yet to see any other center do this. Third, BCH has a whole program dedicated to the “bivent.” They call it the Complex Biventricular Repair Program. After all, BCH really pioneered this type of repair. Now when I refer to Boston Children’s Hospital here, I’m really referring to their Chief of Cardiac Surgery, Dr. Pedro del Nido, and his fellow cardiac surgeon, Dr. Sitaram Emani.
After we learned of Savannah’s complex heart defects, we began extensively researching treatment options. We eventually found Boston’s Bivent repair program and Dr. del Nido. At that point, Lori reached out to him to ask if he would take Savannah on as a patient. He agreed. Once Savannah was born and we really got to see what she had going on in there, even our Cincinnati cardiologist recommended Boston as Savannah’s best repair option. So, here we are. Five short weeks away from the scariest day of my life!
I’m dreading it. Completely do not want to go! Intellectually, I know this is what Savannah needs. Emotionally, I don’t want to put Savannah through this. I don’t want Lori to have to go through this either. This whole situation is just scary. The life of my little girl is sitting in the balance here! This is not okay.
But beyond the emotional turmoil this brings, there are also some practical issues that go along with this surgery. I’ll be taking unpaid leave from work to go to Boston. Lori won’t be working either obviously. We do have a place to stay in Boston, and it’s $30 per night. While this truly is a huge bargain for Boston, Massachusetts, this expense will add up quickly. Likewise, air travel just to get there and back will be extremely expensive. Add in food, other basic essentials, and lost wages, and we’re looking at thousands upon thousands of dollars in expenses over the next few months. Now this is without even considering the medical costs! You don’t want to know how big those are.
If you’d like, there are several ways that you can help. First, pray. Pray for Savannah, her medical team, and us as well. Secondly, eat. This coming Saturday, April 25th, it will be Savannah’s Day at Hawg Heaven in Kokomo. Carol Wills and her staff so graciously helped us last spring with a similar event, and they’ve once again agreed to do the same this year! Hawg Heaven makes amazingly delicious food, so please come out next Saturday to Hawg Heaven at 425 Defenbaugh St in Kokomo.
Lastly, we will certainly accept cash or check donations for Savannah’s Heart Fund. Donations can be sent to Savannah’s Heart Fund, 120 N Dixon Road #314, Kokomo, IN 46901. They can also be made at any First Farmers Bank & Trust branch. You’ll just need to mention my name, Ryan Hensler, and that the donation is for Savannah’s Heart Fund. It may just be easier to click on the YouCaring widget at the top right of this page to make a donation online. Every bit helps, and we are so very thankful for everyone who has helped Savannah through this journey!