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Grateful for Elisa Cuenco

A personal campaign sponsored by Adena Cuenco

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January 29, 2016 we learned that our third child was to be a girl, and following that appointment we also learned that she had a suspected congenital heart defect.  This diagnosis sparked a series of appointments during which we came to learn more and more about what we were to face as a family.

 

Elisa Grace Cuenco was born on June 13, 2016 and was immediately rushed to a separate room where she was connected to an IV and given medications which would keep her alive and well until her surgery date.  Comprehensive testing showed that she was born with an Interrupted Right Aortic Arch, ventricular septal defect, atrial septal defect, small pulmonary arteries and a bicuspid aortic valve, as well as other symptoms related to her 22q11.2 Deletion Syndrome diagnosis.  Her cardiologists decided that she was a bit too complicated for her surgery to be performed at CHEO and she was therefore air lifted to SickKids at 7 days old, with open heart surgery booked the following day.  As parents of a small, medically fragile infant, that was the longest and hardest day of our lives.  Ellie came through the surgery with a few complications but overall healed very well.  We were discharged on July 2nd and drove home so that she could spend time with her big brother and big sister.

 

Her heart was not able to be completely repaired during her first surgery, and respiratory viruses combined with her small pulmonary arteries meant that congestion was very dangerous for her.  Three weeks after she was discharged from SickKids we brought her to CHEO’s ER because she was having trouble breathing and her oxygen sat’s were dropping very low.  It took two weeks to recover from that virus, only to land back in hospital again after another three weeks with another simple cold. 

 

We kept her in isolation from her siblings for the month of September in anticipation of her first catheter intervention surgery to be held at SickKids on September 30.  That procedure seemed to greatly improve her pulmonary arteries as she would still get colds but would not have the same trouble breathing as before.  She had another catheter intervention in January at SickKids to further improve and widen those pulmonary arteries.

 

All through this time, CHEO’s cardiology department has been a strong, supportive presence in Ellie’s life.  From our first meeting with the cardiologist in February 2016 where we learned of the diagnosis, to her ongoing testing and monitoring, the doctors, surgeons, nurses, ultrasound technicians, ECG technicians, social workers and administrators have been with us through it all, literally saving our daughter’s life. We are forever grateful for everything they have done for her, and look forward to seeing them often through her childhood.

 

In deep appreciation for the CHEO cardiology team, and in honour of Ellie’s first birthday, we have set up a fundraiser for CHEO Cardiology.  This is very timely as CP is currently matching all donations to CHEO Cardiology!  Every dollar donated will be doubled and will be put towards a new Catheterization and Intervention Suite at CHEO, which will greatly update their current operating room.  With more catheter interventions in Ellie’s future, we know the importance to families of having access to the best equipment for the treatment of their kids.

 

Please join us in celebrating Ellie’s first year by making a meaningful and powerful contribution to CHEO.  We would be thrilled to raise $1,000!