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Bailey Jean Moore
May 15, 2017
Donations for Bailey can be sent to:Wells FargoATTN: Bailey Moore Account6225 Sycamore Lane NMaple Grove, MN 553691-800-TO-WELLS (1-800-869-3557)READ MORE ON BAILEY AND THE MOORE FAMILY AT www.weheartbailey.comBailey Jean Moore was born on April 9th, 2009. She is "Baby B" of our triple blessing. She was born with Tetralogy of Fallot (TOF), which is a combination of four specific heart defects; Pulmonary Stenosis, Ventricular Septal Defect, Overriding Aorta and Right Ventricular Hypertrophy.
At 6 weeks old, Bailey underwent her first open-heart surgery and it was a success! After 3 months in the NICU & PICU, Bailey was finally able to come home in the summer of 2009. In March 2011, Bailey underwent her second heart surgery and had a Amplatzer Septal Occluder Device placed in her right heart chamber to repair her ASD/PFO. Because this device can change the electric conduction of the heart, it's possible that she may need a pacemaker as well.
Over time as the arteries, valves and patches she has in, on and around her heart weaken; they will need to be surgically repaired. Unfortunately, these surgeries will continue well into her adult life and child bearing years.
Bailey does have a lot of other health issues. In May 2010, she was diagnosed with a rare chromosome abnormality. In fact, it is so rare that there are no other documented cases of this specific 1p31.3 deletion in the world. She also has a small benign tumor on her kidney caused by nerve tissues bundling. She has suffered three strokes, which in addition to her chromosome deletion have caused mental and physical delays.
In October 2010, Bailey was diagnosed as having Triplegic Spastic CP, which is a mild form of Cerebral Palsy affecting three extremities - her right arm and both legs, and Dystonia CP which causes severe leg pain. An MRI the following month showed that Bailey has Hydromyelia (spinal cord fluid leak) at the inferior spinal cord from T9-L1 (rib cage to pelvic bone), which will need to be repaired by a Neurosurgeon when she gets a little older.
In May 2012, an MRI of her brain showed Bailey as a Rathke benign cyst in the lower right portion of her brain. As of now, it does not need to be surgically removed. They will do repeat brain scans every 6 months to make sure it's staying stable.
In August of 2011, Bailey was diagnosed with Primary Hypothyroidism. Although this condition is not life threatening, it is a lifelong altering situation in which she'll need to take medication daily to keep her TSH & free T4 in normal range.
In June 2012, Bailey had eye surgery to repair her strabismus in the left eye and blocked tear duct in the right eye. She continues to have her vision closely monitored as she will continually need this surgery throughout her life.
December 2013, Bailey had a tethered cord release completed on her spinal cord. Thankfully that has alleviated the horrible leg pain Bailey use to get frequently.
We really appreciate all the support, thoughts and prayers that our family and friends have blessed us with. We are relying on our faith more than ever. As much as we worry about her future heart surgeries, reality is that heart failure, infections, and endocarditis can happen at anytime. We pray God will take care of our little miracle baby, in addition to her brothers and sister.