Sunday, February 10, 2013

Day 10 - Callie Hornbuckle



Our adoption journey began in 2008, when our daughter Maili came home from China. She was 4 years old, and the information in her file was vague and incomplete at best. We were told that she had congenital heart disease, but there were no details given and unfortunately we were unable to get any updated medical information from her orphanage. Her adoption was truly a leap of faith, and we were delighted to discover once she arrived home that her heart was perfectly healthy and normal. Perhaps she had a small hole in her heart which resolved itself at some point; we may never know. At any rate, we prepared for the worst but hoped for the best, somehow knowing that we would deal with whatever was to come. We were beyond blessed when it turned out that her so-called special need was nonexistent, but had the complete opposite been true we were prepared to meet whatever needs she might have had. Her adoption paved the way for the arrival of her sister three years later, whose special needs were very real indeed and very frightening at first glance.


Our daughter Callie was adopted from China in 2011 at the age of 6. She was what is known as a Special Focus child, meaning that she had multiple special needs listed in her file, some of which were considered pretty serious by most people’s standards. Although we were able to get updated medical information this time around, there were still many, many unknowns and the word which kept jumping out at us as we read her file was “inoperable.”  We knew that she had a history of pneumonia and lung issues and that she had dextrocardia, meaning that her heart was on the right side of her body. We were told that she had an ASD and a rather large VSD, in addition to some very unusual anatomy in her heart as well as other areas of her body which undoubtedly formed at the same time as her heart while she was in the womb. She had some missing ribs, some half-formed vertebrae, and some digestive issues for which she had undergone surgery as an infant and which may or may not have been resolved.  Altogether a very frightening picture at first glance, but somehow we knew in our hearts that this was our daughter, and we felt an inexplicable sense of peace about our decision to make her part of our family.

Nevertheless, once we had her in our arms, it didn’t take us long to notice a few things that had not been mentioned in her file. She was unable to run across the room or even giggle without gasping for breath. She had a chronic, rattling cough which never lessened and seemed to become exponentially worse at night, causing her to cough all night, every night. No amount or combination of over -the -counter drugs or even antibiotics seemed to have any effect. And she vomited multiple times throughout the day for no apparent reason other than the fact that she was always coughing. She was very tiny at age 6, at about the third percentile for height and weight on the Asian growth charts, I’m not certain she was even on the American charts at that point.  Although she was only 8 months younger than Maili, she was often mistaken for a 3 or 4 year old at the age of 6. In spite of her many medical issues, it was immediately obvious that she was one of the brightest, spunkiest, most exuberant 6 year olds we had ever encountered. She came to us with open arms, and left the civil affairs office hand in hand with her brother and sister. It was literally love at first sight, from the moment we met her it was evident that she was ours and we were hers and no matter how small she might be physically, this little girl had a BIG personality and a fighting spirit. She would need it in the days ahead.  



Upon returning home from China, Callie’s year-long medical journey began.  We discovered that she had a rare congenital heart defect called Scimitar Syndrome, which is so rare that only 1 in 100,000 is affected by it at birth. In addition, she had a hypoplastic right lung which had already sustained considerable damage and Pulmonary Hypertension, both results of her heart having gone unrepaired for so long. Amazingly enough, we were told that she was a candidate for surgery after all  and that her heart could indeed be repaired, contrary to what China had told us all along. Because her condition is so rare, the surgery for it is not at all a common one and many families who have children born with this heart defect have to travel out of state just to find a surgeon who can perform the surgery successfully; however, we were blessed to discover that there was a surgeon in our area who had experience in this type of surgery and had actually trained under the surgeon we would have ended up sending her to out of state!  Four months after coming home from China, she underwent open heart surgery for Partial Anomalous Pulmonary Venus Return and her surgery was a complete success. The difference was almost instantaneous, our little firecracker was full of ENERGY and she has not slowed down since. Gone is the cough that plagued her all night, every night. Gone are the days when she had to stop and rest if she ran across the room. This girl is full speed ahead and nothing slows her down. And finally, she is growing. She has grown 4 inches and gained 11 lbs since she joined our family in the summer of 2011, and now that she no longer throws up constantly from all of the coughing, she eats an incredible amount of food for someone so small .



Callie’s medical journey did not end with her surgery, however. Extensive medical testing over the next few months revealed what her pediatrician had already begun to suspect: Callie has VACTERL association. Basically it is collection of birth defects which are typically seen together due to the fact that those body systems seem to form in the womb at the same time. It is characterized by
Vertebrae abnormalities
Anorectal Malformations
Cardiac Abnormalities
Tracheoesophogeal fistula
Esophogeal Atresia
Renal (kidney) defects
Limb differences ( absent or fused fingers, missing bones in arms or legs) 


Usually if kids are born with one or more of these abnormalities it is best to have them tested for the others, just in case treatment or surgical intervention is needed. We knew that Callie had been born with several of these but we weren’t certain about the rest, so we spent the better part of a year having everything checked out by a huge number of specialists. We knew before we adopted her that this was a possibility; there were many unknowns, and her medical file seemed scary enough with regard to the things we did know about. On July 11, 2012 Callie underwent urodynamics testing, the last in a year-long lineup of tests and specialists. And miraculously, this final test, like all of the previous ones, came out perfectly NORMAL!  No medical
restrictions, no more surgeries, no medications, no limitations-just your average 1st grader who lives life to the very fullest. People who meet her for the first time have a very hard time believing she’s ever been considered anything but completely healthy. Yes, she has a very unique anatomy which is created differently than that of most people. But everything is working perfectly fine in spite of her unique anatomy, and what we have is an incredibly bright, healthy, happy little girl with a personality way bigger than the rest of her. This little girl is going to do big things, we have no doubt about it. And we can’t wait to see what life has in store for her. 





3 comments:

amy childs said...

I have no idea who is the luckiest one here...such a beautiful , meant to be, family.

Mary Sammons said...

Beautiful!!!!!!

LaKasha Strickland said...

I loved your story! God bless your girls hearts,lives, and family!

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