SickKids VS: Meet Adina
GUEST BLOG: Gitty, mom to SickKids kid Adina
Adina was born at 35 weeks. She was tiny and beautiful ... but not breathing well and with no reflexes. The doctors immediately realized that something was very wrong.
After being stabilized in the NICU, Adina was transferred to SickKids, which would remain her home for much of the first year of her life. Today, Adina is followed by no less than 10 different departments at SickKids, putting her in the category of children termed medically fragile. She is dependent on technology to survive, spending many hours of her day hooked up to machines.
Adina has faced many challenges in her young life. She can’t swallow so she needs very frequent suctioning to clear her airway to allow her to breathe comfortably. She has severe reflux and dysmotility in her gut and at the moment is unable to tolerate any food. Originally she was fed through a feeding tube but is now only fed TPN, which is IV nutrition. She suffers from seizures, which are now under control with medication. Adina is hypotonic, meaning she has very low muscle tone. This makes every movement difficult for her. At 20 months she is unable to sit, stand, or walk.
When I was approached about having Adina participate in this year’s VS campaign, I was really excited. I see Adina fighting every day. She has a strong and fierce spirit in a very fragile body. Most people regard children like Adina as weak and helpless, so having her participate in the campaign would provide us with a great opportunity to celebrate her life and show off her strength and resilience. Adina has struggled every single day of her life but her smile continues to light up her face through the pain and suffering she experiences.
"Adina has a strong and fierce spirit in a very fragile body."
In order to breathe, Adina fights through secretions that she's unable to swallow; she fights to get enough nutrition to survive; she fights against her hypotonia to lift her head and to smile. These are tasks that are extremely difficult for her and there are some days that she's in too much pain or feeling too weak to do them, but there has never been a time that she just gives up. She has shown us over and over again how hard she tries.
Luckily, Adina is followed by the amazing complex care team at SickKids, and they are fighting right alongside her. They have been with us from the beginning, encouraging her, empowering her and adoring her. Her complex care team is made up of incredible and dedicated individuals who carefully manage every aspect of her care. They guide us in giving her the best quality of life possible by not only ensuring that she remains as healthy as possible and making sure that her medical challenges are addressed, but by giving her opportunities to have experiences every child should have, even while she is sick and hospitalized.
Adina has won many battles already. Firstly, and maybe most importantly, she has won the hearts of her team. Prominent doctors pass her in the hallway and lean down to her stroller to get a high five. Nurses who may have only taken care of her once in the ICU or other departments remember her name and greet her with love and smiles, while I scratch my head trying to recall how they know her. These are people who take care of hundreds of patients and still take the time to acknowledge and love my little girl.
At the moment, no one can predict what Adina's life will look like in the future or even tomorrow. We know that she has many challenges and battles ahead of her. She will have to fight for things that most children take for granted. She will likely have to fight for inclusion, to be understood, to be accepted, and to remain healthy enough to go to school. There is a lot of uncertainty about how she will develop and if she will ever be able to eat, speak, stand or walk, and that uncertainty brings me a great deal of fear and anguish.
But there is one thing we all know is certain. With the support, dedication and love of our complex care team and the entire team at SickKids, winning is something Adina will always continue to do.
