
Kamryn’s Fight
Kamryn Ryan Gracianette is a beautiful baby girl born October 7, 2020, weighing 5 lbs. 14 oz., and is a dream come true for mommy and daddy! She appeared to be 100% healthy, but sadly this was not the case. The next day all their joy quickly turned to fear when the doctor’s discovered a defect in Kamryn’s 1-day-old heart. Kamryn was immediately transferred to Lurie Children’s Hospital of Chicago where a fetal echocardiogram was performed and she was diagnosed with Tetralogy of Fallot (a rare congenital condition caused by a combination of four heart defects). After meeting with multiple doctors, we learned that Kamryn would have to undergo multiple procedures and surgeries throughout her life. Kamryn underwent her first procedure at 5 days old placing a stent in her ductus arteriosus to allow proper blood flow to her lungs. The stent will allow time for Kamryn to grow and gain a little more weight in order to perform her first surgery within a couple months. Unfortunately, about an hour after the stent placement, Kamryn suffered from a minor stroke. Thankfully, one of her amazing doctors was in the room at the time and performed CPR, bringing Kamryn back to us. An MRI was performed after the incident, and due to the minor stroke, Kamryn also received some minor brain damage. The doctors cannot give a definitive prognosis as to the effects this will have on Kamryn, as the recovery of each child is unique and requires a PM&R physician, occupational therapist, physical therapist, speech therapist, neuropsychologist, social worker, school service officials, and nutritionist to develop an individual plan with her growth and development. Infants are very resilient and we are very hopeful that with the love and care of Kamryn’s parents and her team of professionals, Kamryn will reach her highest potential. This is in conjunction with the cardiac care for her Tetralogy of Fallot.
Kamryn spent the first 19 days of her life at Lurie Children’s Hospital hooked up to a breathing tube, feeding tube, IVs, and heart/oxygen monitors. She is a strong little fighter and was able to go home on October 26, 2020 on a home monitoring program. She is expected to have her next procedure in December to determine a date for her heart repair surgery.
Any funds raised are going to be used to pay for a combination of living expenses in order to continue to care for Kamryn including gas and parking for hospital visits, medical expenses not covered by insurance, and medications. The pandemic is not helping the situation and this has been a very difficult time for mom being on maternity leave and dad’s place of employment shutting down once again per Illinois governor’s orders. The financial instability is becoming extremely heavy. We are all going through such a difficult time with COVID so anything helps and we are extremely grateful for any donations.