Meet Alivia, She is 17 months old!
She was born 9 weeks early with Tetrology of fallot, Pulmonary atresia, atrial septal defect, ventricular spetal defect and major aortapulmonary collateral artery (MAPCAS). She was also born with 22q11.2 deletion syndrome and weighed 3 pounds at birth. She spent over 75 days in NICU before she was stable enough to be moved up to the pediatric unit. Eventually, she was healthy enough to go home and that is where she grew and worked on getting stronger for surgery.
She had two open-heart surgeries before the age of one. The second surgery was an emergency redo, it was scheduled to be approximately 4 hours....but she came out 17 hours later fighting for her life, as the doctors had a difficult time controlling the bleeding of her heart. She came out of the O.R. extremely ill and needed ECMO and a ventilator to keep her alive.
Unfortunately, Alivia is now in severe heart failure due to everything her tiny heart has had to go through. Alivia is being placed on the transplant list and will need a heart transplant within the next 6-12 months. Alivia and her family live in Calgary and will need to stay in Edmonton for the duration of her upcoming heart surgeries and will endure much travel to and from appointments and hospitalizations a city away. Alivia's family will be separated because her Daddy will still need to work to meet the families financial needs at home because Mom's full time job is keeping Alivia alive. While Alivia is having surgery her Daddy wants to be there to support his litte girl and we are hoping that this page can help make that dream come true for them. Alivia's family are also seeking the expertise of the medical team at Stanford to best her chances at survival and may need to travel there for surgeries as well.
Moving on to how 22q11.2 DS has impacted Alivia's life this far....22q.11.2 DS is a sydrome that affects the entire body. In Alivia's case it caused her complex congenital heart defects and also caused her to have extremely 'low tone' in her muscles which means she is yet unable to crawl,stand or walk. Her immune system does not function normally and she suffers from feeding difficulties and requires a feeding tube and supplemental oxygen at this time. 22q11.2 is a bit of a 'mystery'.....not because there isn't research, data or information about the syndrome but, because it is never black or white...there's a lot of a gray areas (like most things in life). When someone has a child with 22q11.2 DS you truly don't know how the syndrome may affect them until you are living it in 'real time'.
Alivia has been through many challenges in her life and yes she has scars, but she will wear them proudly. They tell a piece of her story, but they DO NOT define her!
Alivia's and her family greatly appreciate any help that you might have to offer them.
- Susan Peacock
- Silviu Potlog
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