ABIGAIL ELIZABETHRetrun to 22q Stories
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Our daughter, Abigail Elizabeth, or Abby as we call her, was born on December 15th, 2003. After years of battling infertility we could not wait for her to arrive. Labor was relatively quick, but with a few complications. There was meconium in my fluid, and Abby experienced many heart decelerations during labor. She arrived at 6:45am and weighed in at 8lbs 13oz and was 18 inches long. She was pronounced healthy a short while later.
Six hours after her birth Abby began to turn blue and dusky and was rushed to the NICU. Four hours went by before we were told she had hypocalcemia (low calcium) and was being examined further. She was then diagnosed with Meconium Aspiration Syndrome. The next day, Abby’s left lung collapsed. She had a chest tube inserted and was placed on Bi-Pap. She spent 6 days in the NICU and was released just 3 days before Christmas.
Abby suffered through many ear and sinus infections, chronic pneumonias, as well as being diagnosed with a hearing loss in her left ear. Her first years of life had us always running to different doctors, none of which could explain her wide variety of symptoms. She was very slow to grow, meet milestones, and had difficulty eating and swallowing. To say we were frustrated would be an understatement.
Shortly before her 4th b-day, Abby was suffering through another round of pneumonia. I had taken her to an acute care center for a chest x-ray. The radiologist had made note of a right sided aortic arch, which we had never been told before. I began researching and discovered 22q 11 was associated with a right aortic arch. As we began reading about 22q 11, we immediately knew we had found our answer. We met with Genetics a short while later and 22q 11 was confirmed. However, we still had the new cardiac condition to explore.
In February 2008 Abby was diagnosed with an absent left pulmonary artery and a hypo plastic left lung. Many consultations followed, and we made the decision to try to connect the tiny collateral vessel that was found to her main pulmonary artery. Abby had open heart surgery June 6th, 2008. Sadly, the repaired vessel did not remain open resulting in no blood flow to her left lung. Abby has since developed pulmonary hypertension and is right lung dependent.
Abby is currently seen by a pulmonologist, cardiologist, endocrinologist, ENT, and immunologist. She attends weekly speech and occupational therapy sessions. She has endured 8 surgeries, 2 cardiac catheterizations, and too many x-rays or lab tests to count.
Abby is an incredibly smart, precocious, beautiful 5 1/2, year old girl. She participates in gymnastics, will begin Kindergarten this fall, and is wise beyond her years. We are not sure what the future holds for Abby, but we do know she is here to make a difference. Thank you for your support!