When I walked into the Transitional Care Unit of BC Children’s Hospital on Sunday afternoon, I immediately fell in love. I was there for a Helping Hearts Session with little Ellie. Her bright blue eyes stared at me intently when I first said hello, and then she started to coo. I melted. I spent the next hour photographing her and could have kept going forever. She’s just so incredibly sweet!
Ellie is not your “typical” baby and I am so honoured to share her story with you.
After a complicated pregnancy and several weeks of bed-rest for Susanne, Ellie was born 8 weeks early. She weighed just 3 lbs and was only 15.5″ long. It wasn’t long before the family noticed that Ellie was facing more than the typical preemie issues. She slept a lot, had difficulty sucking and was very floppy. At four months, it was confirmed that Ellie has Prader-Willi Syndrome. It is caused by a gene missing on Chromosome 15, and is the leading cause of childhood obesity. The malfunctioning hypothalamus gland creates an insatiable hunger in kids starting at about 2. Currently, there is no cure.
Prader-Willi Syndrome is usually treated with growth hormone replacement therapy, which helps to normalize body mass, build lean muscle and aid in brain development. It can increase IQ by as much at 30 points, which can be the difference between “normal” functioning and considerable impairment. In preparation for this treatment, Ellie underwent a sleep study. It was discovered that she also has severe obstructive sleep apnea. Something that can be helped with the aid of a bi-pap machine to keep her airway open. However, due to her small size, the mask doesn’t fit properly, which requires her to be monitored for safety and has meant a return to Children’s Hospital. Over the next couple of weeks, Ellie needs to grow big enough to fit into a larger bi-pap mask. This will mean that she can start her growth hormone therapy and avoid a tracheotomy to secure her airway. At 9 months, she weighs just 10 lbs and is the size of a big newborn.
However, I do not want to define Ellie by her diagnosis. She is a happy, bright eyed little girl, who spent the entire session cooing and sticking out her tongue at me. She was an absolute delight to work with and while she may be small in stature, she makes up for it with personality! There have been many challenges in her journey so far, but Susanne shared with me that it has brought their family closer together. After having Ellie home for 6 months, it’s been difficult having her back at the hospital. Her big brother Jacob visits often and he adores his little sister. She is also well loved by all the nurses who kept coming over to check out her latest outfit during our session!
This was my first photograph of the session. Don’t you just love her eyes?
So very serious!
Kisses from mom…
One Small Step, is a walk to raise money for Prader-Willi Syndrome. I hope you’ll take a moment to learn more about it.
I simply can’t do a post without tiny little feet 🙂
The biggest smile of the day is reserved for mom!
Thank you, Susanne, for allowing me to capture these images of Ellie. She is truly beautiful!
Happy Wednesday 🙂
p.s. we will return to Why? Wednesday tomorrow!