Here is Avery's Story
Paul and Angie Akeman longed for a child and endured the infertility roller-coaster ride for five years when they were finally blessed with a pregnancy. They believed their long journey had come to an end when their beautiful baby girl was born on April 18, 2005. Avery Grace Akeman had finally arrived and her life was celebrated by many. Avery was born five weeks premature and spent 15 days in the NICU (Neonatal Intensive Care Unit). During this time she displayed typical preemie issues, such as apnea, bradycardia (heart-rate drops), and feeding issues. She left the NICU without any issues except significant apnea, and therefore was sent home on an apnea monitor. It was believed she would outgrow this issue with time and would continue on with life as a normal infant. After being home for only nine days, Avery was admitted to Children's Medical Center in Dallas (CMC) for further testing as her apnea was worsening and would even result in cyanosis (turning blue). Avery and her parents endured a week of tests, including a sleep study in which Avery quit breathing on them over 28 times in one night, and her first surgery at just 4 weeks of age. Avery was sent back home on the apnea monitor under the assumption she had a very significant case of the preemies and a significant case of reflux. Again, her parents and the medical professionals were hopeful she would outgrow these episodes.
Unfortunately, at six months of age, Avery had not outgrown these episodes. In fact, they were worse. Not only was she was still experiencing notable apnea, it had progressed to the point she would turn blue even while awake and sitting up. Avery was re-admitted to Children's Medical Center in Dallas at 6 ½ months of age. Her parents were told they would be there about three days in order to run some tests and come up with a treatment plan. 149 days later they were still there. Through a series of events, medical professionals learned Avery's apnea only occurred when being fed by mouth. She did not have any issues if she was fed through an NG (nasogastric) tube. The apnea did not occur until two to three hours post feeding, and therefore it had not ever been thought of to be a feeding issue. After trying many different plans of treatment, Avery was transferred to Baylor Our Children's House for intensive feeding therapy. She spent seven weeks getting wonderful treatment there, unfortunately, without any improvement in the area of her apnea. She was transferred back to CMC for surgery to perform a nissen fundoplication and G-tube (Gastrostomy or feeding tube) placement, as she was not taking any feedings by mouth at that time.
At this point Avery's parent's, while beyond exhausted, were very hopeful this surgical procedure might make a difference. However, once again, things worsened. After the surgery Avery began having serious bradycardia anytime food would enter her stomach at all. After many heart wrenching attempts to repair this problem, it was determined Avery would be unable to have anything to eat or drink by mouth or through her G-tube. Fortunately, when food was administered through her intestines via a J-tube (Jejunostomy tube), Avery did not have any apnea or bradycardia.
Avery's medical team contacted other hospitals and doctors across the country and even across the world. Everyone always came to the same conclusion that it must be some very rare type of vagal nerve dysfunction. Unfortunately, this is where medicine has failed Avery, as there is no way to assess the vagal nerve in children at this time. Avery's doctors have yet to locate another child with Avery's exact combination of symptoms. Her parents have been told on many different occasions that she, more than likely, would have been a SIDS (sudden infant death syndrome) baby if she would not have gone home on the apnea monitor.
After 149 days in-patient, Avery's parents were more than ready to get their, now, almost one year-old back home. Avery was sent home with a J-tube with the hope she may outgrow whatever it was that was causing her symptoms. Unfortunately, she was only home for 48 hours before being re-admitted for significant dehydration. Avery was in and out of the hospital repetitively. She spent her first birthday, first Easter, first Thanksgiving, first Christmas, and first New Year's in the hospital. After 9 months of being fed through the J-tube, Avery had lost over two pounds and without any other options she was placed on TPN(Total Paraenteral Nutrition) and Lipids. This is IV nutrition that goes through a central line in order to sustain her life. It was January of 2007 and Avery was 20 months old and had not made any progress. Her doctors sent her to Cincinnati Children's Hospital Medical Center in order for a new set of eyes to see Avery and give their opinion. Cincinnati doctors repeated many tests but came to the same conclusion the rest of the doctors had come to. In fact, they told Avery's parents there was not a test that had not been done on their daughter! Doctors in Boston, Philadelphia, Stanford, and others have all reviewed Avery's files only to say the same thing and state they do not believe they have anything else to offer.
In June of 2007 Avery was admitted to the ICU (Intensive Care Unit) of CMC to attempt small drips of food back into her stomach. By the grace of God this was successful without any apnea/bradycardia. Her parents spent 6 months working on volume into the stomach and then she was admitted to Baylor Our Children's House in February 2008 to attempt oral feeds again. Another miracle occurred and Avery did not have any apnea/bradycardia. She has progressed with her oral feedings to the point she truly eats like a normal 4 year old. Avery's parents state they will never take a single bite for granted! However, unfortunately, Avery appears to have some malabsorption issues in which her body does not absorb what she eats. This requires her to remain on the TPN/Lipids to date.
Avery also struggles with hematology issues that have progressed over time. In March of 2008, a little less than a month after introducing oral feedings, Avery ended up with a life-threatening sepsis episode that left her in the ICU unresponsive. Avery almost lost her battle during that event, but by the grace of God she pulled through once again. She had struggled with anemia, which her doctors assumed was from the mal-nutrition and lack of iron absorption, prior to that episode. She received blood transfusions every few months and it was just thought to be part of her treatment. While Avery was very fortunate to make it through that time, her hematology issues have taken a dramatic turn for the worse since. Whether or not the two are related remains a mystery. Avery just underwent a bone marrow biopsy in order for her doctors to have a better understanding to what her little body is doing.
Avery has spent 372 days inpatient to date. She has endured 20 surgeries or procedures requiring general anesthesia and has visited the Emergency Room 17 times. She has five standing appointments each week and many others are added to that schedule as needed. While Avery's parents remain hopeful that with enough time she may “outgrow” these issues, the journey has been long. Avery has come a very long way, but she still has a long way to go. The Akemans trust God holds each of them in the palm of His hand. They pray that in His time, He will chose to heal their precious daughter.
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