We Chose CHD!

Instead of Congenital Heart Disease (CHD) choosing us, I guess you can say that we chose CHD!  A common question I got asked by doctors who met Lily Grace for the first time was, "Did you know how complex her heart was when you adopted her?"  Imagine their shock when I tell them that we chose Lily specifically based upon how gloom and doom her medical prognosis was.  The very thing that caused other adoptive families to run away in fear had our family racing to bring our sweet girl home.

Lily was born in China with Hypoplastic Left Heart Syndrome (HLHS).  Simply put, Lily was born with only half of a heart.  She also has Heterotaxy, which means that all of her organs are on the wrong side of her body.  Lily’s heart is further complicated by being upside down, backward, and in the right hand side of her chest.  She had two open-heart surgeries in China, and then the surgeons deemed her “terminal” and inoperable.  At that point her orphanage had her adoption paperwork completed.  We came to find out on Gotcha Day, the day we met Lily for the very first time, that her orphanage truly believed a family would never ‘chose’ her. 

Children with HLHS typically have a series of three palliative open-heart surgeries.  It wasn’t until Lily was home from China, and she had her third open heart surgery that we understood why the Chinese surgeons deemed her inoperable.  The very first surgery that Lily ever had was to insert a shunt into her heart to increase pulmonary blood flow.  A textbook BT Shunt is placed on the right hand side of the heart, near the Superior Vena Cava.  Lily’s Superior Vena Cava is located on the left hand side of her heart due to Heterotaxy.  Unfortunately, the surgeon placed Lily’s BT Shunt on the right hand side of her heart, far away from her Superior Vena Cava.  This mistake began a series of critical issues for Lily Grace.  Shortly after her third open heart surgery, called the Fontan Procedure, Lily’s right pulmonary artery (RPA) became completely discontinuous from her heart.  In 2013 Lily’s surgeon attempted to reattach her RPA to her heart with a donor adult femoral vein, but unfortunately that surgery failed.  Lily is currently living with only one functioning lung. 

The US cardiologist who reviewed Lily's medical file while she was still in China was worried that he may have given us false hope about Lily's congenital heart defect.  The truth of the matter is that before we even knew if Lily was operable we submitted a letter of intent, asking China if we could please make her our daughter.  Lily needed heart surgery that China would not (could not) do.  But, what Lily really needed more than surgery was the love of a family.  Prior to bringing Lily home from China Jacques and I always said that we wanted desperately to show Lily the love of a family for as long as God allows her little heart to beat.  And here we are 3 ½ years “home” and Lily does KNOW the love of a family, and she knows about Jesus and how much He loves her too!!!! 

A small percentage of children who have had the Fontan Procedure end up with a life threatening condition called Protein Losing Enteropathy (PLE).  PLE caused horrible fluid retention in Lily’s lungs and abdomen.  Lily was essentially drowning to death in her own secretions.  Try as they might, Lily’s cardiac team was unable to control her PLE symptoms with medication.  We were told that the only cure for PLE is a heart transplant.  Lily was evaluated for a heart transplant, which is when we received the devastating news that due to her complex anatomy and the fact that she only had one lung attached to her heart, Lily was denied transplant listing by three transplant centers.  Shortly after we had conversations with the hospital’s hospice team about bringing Lily home to die, her heart failure cardiologist walked into the room and asked me if she could please present Lily one more time to their transplant committee.  Twenty-four hours later Lily was listed as a 1A, top priority, for a new heart.  On June 14^th, 2014 Lily Grace received the most precious gift that could ever be given - her Hero’s heart.  Lily’s donor was a non-lung donor due to the trauma he suffered in the motor vehicle accident.  What this meant for Lily was that she also received her donor’s left pulmonary artery.  Her surgical team was able to put Lily’s new heart in its correct anatomical position in her body even though all of Lily’s connections are upside down and backwards from her heterotaxy.  Lily’s new heart is only attached to her single left lung since her right lung had previously become discontinuous from her heart due to a blood clot, and the risk of Lily being on bypass longer was not an option.   Lily Grace is said to be the most complicated pediatric heart transplant to ever be done in the USA.  A huge miracle indeed!  

After a very difficult recovery, and 508 days on supplemental oxygen, Lily Grace is absolutely thriving!  She is filled with life, extreme love, and bountiful HOPE.  It has been an honor to be Lily’s mommy.  I have learned through this adoption that even more than Lily needing a family, I needed Lily.  She has taught me more about life and love in the 3 ½ years that I have known her than I learned in the prior 34 years combined.  Loving Lily is an excruciating love.  Selfishly, Jacques and I want more than anything for Lily to grow old and outlive us.  But whether she does that or not, if I am still alive to see her take her last breath, I will know without a shadow of a doubt that adopting Lily was exactly what God meant when he told us to go and be LOVE. 

Love is risky.

But let me tell you that it is SO worth it.  

A million times over.  

Love is worth the risk.