KIRSTEN - 13 YEARS-OLDRetrun to 22q Stories
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During my first pregnancy, our baby was diagnosed in utero with Truncus Arteriosus, which meant she had a single large arterial vessel as opposed to 2 vessels which are needed to keep oxygenated and unoxygenated blood separate, and also with a Ventricular Septal Defect (VSD), a hole between the walls of the ventricles. We were told the baby would have to undergo heart surgery soon after birth to survive. We were also told she would have to have several surgeries throughout her life to replace the valve when she outgrew it or when it calcified.
Kirsten was born in October 2000, and appeared to be healthy. She was immediately placed in the NICU to monitor her oxygen levels in her blood. At 5 days of age, Kirsten was diagnosed with 22q11.2 Deletion Syndrome. At six days-old, Kirsten had a successful surgery at Children’s Medical Center of Dallas to repair her heart.
Kirsten's first year was rough with many illnesses including hospitalization at two months of age with RSV, a serious respiratory infection. Her heart continued to strengthen and after several months, her cardiologist took her off four medications.
At 18 months, Kirsten's cardiologist noticed that her left ventricle was swollen and not functioning well. She said she would possibly become a transplant candidate. Kirsten was placed back on four heart medications.
Kirsten continues to see her cardiologist every six months. At the last visit, we were told that her heart's condition is the same. She continues to take her heart medications, and she is in 6th grade. We do not know when her next surgery will be scheduled.
Over the past 13 years, the Lord Jesus Christ has taught us to trust him.