Ilyas and Anastasia had just settled in Calgary and were expecting their first child when an ultrasound turned their world upside down.
It was during their 32-week ultrasound they learned their baby simply stopped growing. Doctors closely monitored mom and baby but it was determined baby would have to come out early. Abigail was born four weeks early and weighed just 3.5 pounds.
She was immediately rushed to the Neonatal Intensive Care Unit (NICU) at the Foothills. From the onset there were challenges, many of which would require the expertise of the Alberta Children’s Hospital so Abigail was transferred to NICU there, where she spent the first month of her life. Abigail was born with a cleft palate, and while it was clear she had other serious medical challenges, it would take numerous exams and genetic testing to determine exactly what, and exactly why.
Specialists soon diagnosed “Abi” with Turner Syndrome, a chromosomal condition that can cause medical and developmental challenges. However her symptoms were more complex. She showed abnormalities in her blood, pancreas and liver, and was frequently getting sick. Abi was also in constant pain – often mom and dad couldn’t touch their little girl because it would cause her so much discomfort.
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At 15 months she diagnosed with Juvenile Rheumatoid Polyarthritis, which explained her pain, and at 18 months doctors in the GI and Hematology/Immunology departments zeroed in on Schwachman-Diamond Syndrome, a marrow failure syndrome. On their own, each syndrome is complex. Together they present significant challenges. Abi has a suppressed immune system and is at high risk of developing bone marrow failure. Many treatments for other immediate issues could put her at risk of developing cancer. Thankfully, she has a team of experts from numerous departments and specialties who want the best for Abbey and won’t give up. Abigail’s arthritis is under control and she is receiving regular treatments with Intravenous immunoglobulin, or IVIG, to help her body protect itself from infection.
Abi is 6 and has made tremendous gains, having gone from severe global delays and negative prognosis to being a relatively independent, witty girl who is now in school, likes guitar and loves Super Hero Girls. Mom and dad are so proud of how strong she is and they are comforted knowing the Alberta Children’s Hospital will help their girl every step of the way.
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