Posted September 22, 2020
Kahlia (pronounced like the flower Dahlia but with a “K”) was born in Pune, India on September 25, 2008. She became a part of our forever family on May 9, 2010. We were unaware of her 22q11.2 deletion syndrome. We were told that she had a heart condition called Tetralogy of Fallot, a cleft palate, and had chronic and serious ear infections.
At 19 months old, Kahlia was so weak, she did not even have the strength to sit up on her own. She couldn’t walk, talk, or even crawl, she wore a size 0 shoe. She was able to do a slight army crawl, but even that was labored and cumbersome. Her finger nails and toe nails were clubbed and purple. Her skin was darker than “normal”. At her Cardiology appointment scheduled just two hours after we landed in Portland, OR, and after a 20 hour flight from India, her doctor took one look at her and told us she was certain she had 22q11.2 deletion syndrome. What was that? Within a week we had a confirmed diagnosis. Over the next 4 ½ months, Kahlia had a pic line for 2 weeks clearing up the e coli in her ears, she had 2 cath heart procedures to buy us time, and she had lots and lots of love and nutrients to help get her strong enough to survive her desperately needed open heart surgery. I do not believe she would have survived much longer without it. Immediately following her surgery, her finger and toe nails turned pink, and her health improved. Just over 2 months later, she underwent her first cleft palate surgery, 2010 was a traumatic year for our Kahlia.
Finally, at 2 ½ years old, Kahlia was strong enough to take her first steps. She was still not able to formulate words, and we began teaching her sign language to help communicate. We soon realized that her first cleft palate surgery was not successful as there was still a small hole in the roof of her mouth making it impossible for her to formulate sounds and words. We were finally able to schedule her 2nd cleft palate surgery at the age of 5. Slowly she began to speak – such an answer to our prayers!
Kahlia underwent her 2nd open heart surgery 4 years ago – at the age of 7. This time to replace her heart valve that was destroyed during her first repair. We hope that is her final open heart surgery for a very long time. Doctors hope that the next 2 valve replacement surgeries can be done through a cath procedure.
Kahlia is a happy, healthy, spunky 11 almost 12 year old that keeps us on our toes. She struggles a lot academically, socially, and emotionally. She learns differently and slower than the other kids, so understandably it has caused a lot of stress and frustration. She often questions why she was born “this way”. Even before this Pandemic, we had planned to homeschool her this fall for her first year of Middle school. She especially struggles with Math and any kind of abstract concepts, but boy does she LOVE to read!
Because of her low muscle tone and often tires easily, sports has never really been her thing. However, she has a love for music, and has found that she is quite good at playing the piano – by far her greatest accomplishment!! She enjoys getting better, and loves the positive reinforcement she has received from teachers, classmates, friends, and family. She has participated in school talent shows and piano recitals every year. As she often struggles with self esteem, she found comfort in Lauren Daigle’s song “You Say” to the point of bringing her to tears. That fall of 2018, her piano teacher found a piano piece of that song. She practiced all school year and played it for her school talent show that spring of 2019. We were all so proud of her!!
Kahlia’s story is still being written. She turns 12 in September, starts 6th grade, with her teen years ahead of her. We hope and pray that Kahlia will find her little niche in this world. No one who spends any time around Kahlia is deprived of her hugs – she gives them openly, freely, and in great amounts!! She is dearly loved.