Incredible. Amazing really. A major triumph on about a million different levels. The courage of this family, who received a similar diagnosis to ours during their second pregnancy, learned that their baby would be born with a life threatening heart condition that would require at least three open heart surgeries with no guarantees. A couple, blindsided by this diagnosis and facing all of the same unknowns that Brian and I were faced with but with a three year old precious boy at home to care for in addition to their heart baby. And sweet Ella -- a little girl, turning five years old today who has had the strength, courage, and otherworldly perseverance to survive three open heart surgeries, seven cath procedures, one very scary heart block, and two cataract surgeries in her short little life.
Our families have been heart friends since Ella was about nine months old and Haven three months old. We were on the same surgery path (as much as any two heart kids can be on the "same path" when clearly no two human anatomies are ever exactly the same therefore making each child's heart journey unique unto themselves). We provided support to each other through all of our combined surgeries and cath procedures and all the poking, prodding, worry, tears and fears that go along with it.
We were "fortunate" in that Ella was six months older than Haven and therefore ahead of us on the surgery path. Each step of the way, Ella would go through one of the surgeries and then we would follow -- so we leaned on them for everything they had learned and experienced each go around.
Ella had her third and potentially final open heart surgery, the Fontan, in April 2012. One year later, Haven had her Fontan. During Haven's hospitalization for the Fontan in April 2013, in one of the more freakishly random occurrences in our lives, Ella was unexpectedly scheduled for a cath on the same day as Haven. The two girls underwent cath procedures on April 22, 2013 and shared a hospital room together on the recovery floor. We have the adorably sweet and slightly heartbreaking photos to prove it. Here's where our shared paths begin to diverge and start moving in two entirely different directions. At the time of Haven and Ella's cath overnight slumber party (if you can call it that :) Ella was almost exactly one year out from the Fontan. Things were supposed to be looking a lot better inside Ella's body. When you are given the goal during your pregnancy to get your kid through three open heart surgeries -- the end goal becomes getting to the other side of that third surgery, the Fontan. And while your kid will never be "fixed" necessarily -- the Fontan circulation, if successful, will keep them alive on half a heart into their 40s -- god willing even longer. In your mind's eye -- the closer you get to that third surgery -- the more you allow yourself to start thinking about "life after the Fontan" -- you begin to get giddy about the potential "normalcy" that might be just around the bend. It's all we can focus on and all that we can hope for since the moment any of us recieved our original diagnosis.
By October 2013, a year and half after her third surgery, it was determined that Ella's Fontan circulation had failed. The half a heart they tried to salvage through the three surgeries would no longer sustain her. Ella was officially in heart failure. Ella's cardiologist and surgeons did everything they could by completing the three surgeries. In her case, it didn't work. We don't walk this road preparing for let downs like this…you have to stay positive the entire time in order to make it through. You can imagine this family's disappointment in not having the charted path work out the way they had planned. Having the wind taken out of your sails would be putting it mildly.
April of 2014, for our family, marked one year since Haven had her Fontan. Her Fontan circulation is working great. She is pink instead of blue, she has loads of energy, her gross motor skills have improved drastically, her cardiology appointments are now once a year. The other side of the Fontan for our family has been everything we hoped it would be. We are lucky.
April of 2014, for their family, marked two years out from Ella's Fontan, and unlike our story, Ella was transferred from her regular cardiology team to the Transplant Team at Children's and was listed for a heart transplant. Two families, connected by a shared experience over the past four years, and now, two completely different outcomes. There is still so much hope that we can all end up back on the same path. We're just going to have to will the outcome we all want into existence -- we just gotta get back onto that same page.
On December 10th it will be eight months that Ella has been waiting for her new heart. The "average" wait time for someone like Ella to get a new heart is 3-6 months. Eight months. It's hard to imagine that someone can live with heart failure like Ella has. But they can, because we are in Boston, and at Boston Children's Hospital they have hundreds of tricks up their sleeves for keeping Ella's body going while they wait for her new heart. Thanks to a backpack Ella wears 24-7 which pumps a miracle drug called Milirone to her heart, around the clock, Ella is one of the only kids EVER to be able to stay at home rather than be admitted to the hospital for the entire time she has been patiently waiting for her heart. Can you imagine how even more difficult this already ridiculously difficult road would be if Ella had been living in the hospital for now what is approaching over 250 days? Can't.even.think.about.it.
And let's not forget what waiting for a new heart means. It means a devastating loss in someone else's family. It means the heart breaking decision a family has to make in that indescribable moment of having lost their own child to somehow also come to terms that somewhere deep down inside that kind of devastation there lives the tiniest flicker of light for another family to get that second shot with their own child. Their loss becomes Ella's gain. And then the clock starts ticking. There's only six hours between those two events where this can all work. The most intricate pattern of stars must align at the perfect moment for a match to be made for Ella and for Kate's phone to ring with the news that it's finally time.
I have to admit to my own "survivors" guilt around Haven's working Fontan circulation. It's hard to wrap your head around how two similar stories could have gone in such different directions -- it just as easily could have been us on this path. There is no rhyme or reason to it. Why us and not them, or why them and not us? Why?
So….you stay positive. This family always has. They get up just like everyone else. Put one leg in each pant leg and walk out the door. Waiting for the phone to ring. Literally. To gather a few things, head to the hospital, to finally go get Ella's heart. Hoping and praying that the heart will be perfect, Ella's body won't reject it, that when it's all over -- she will be as pink and as rambunctious as Haven. That this family can have their lives back. Their marriage back. That Logan can have a healthy sister to play with and not spend his own little life worrying for his parents or for his sister. These will be the gifts that this heart, that we are so eagerly awaiting to arrive, will bring to this family and the rest of us who love them.
Ella is a Thanksgiving baby in so many ways. I am so thankful she was born into this world, I am so thankful that her spunky attitude and sassiness has remained intact through everything she has already been through and for everything she is about to endure, I am thankful for my friendship with her mother, I am thankful for Children's Hospital and their seemingly endless bag of tricks, I am thankful for Haven and Ella's relationship and for the many lessons these two little sunbeams have brought with them to planet earth.
Please sign up to follow Ella's heart page and surround them with the positive energy and support they need as they wait. And on this Thanksgiving…..be Thankful.
Watching this video makes it just a little sweeter of a Happy Thanksgiving, doesn't it?
