For several weeks after she was born in Yorkton, SK, little Halle and her parents were on a quest to discover what was at the root of her serious digestive troubles. After months of no improvement or answers on the pediatric ward in a Regina hospital, the family asked for a transfer to the GI team at the Alberta Children’s Hospital. As there is no pediatric GI service available in their home province, the team in Saskatchewan agreed that this was in her best interest.
In June 2016, Halle and Kaelyn travelled by air ambulance to Calgary. It wasn’t long before Kaelyn found herself surrounded by an entire team of experts who could help her baby girl. She says that Dr. Boctor was remarkable and made her feel like an important part of Halle’s care team. In fact, she was encouraged to participate in rounds with all the different specialists gathered around and ask her questions or vent her concerns. She felt heard and supported through the length of their six month stay.
Halle was diagnosed with Chronic Intestinal Pseudo Obstruction – basically food doesn’t move through her as quickly as it should due to immature or fewer nerve cells present in her bowel. As a result of the reduced motility of her digestive tract, bacteria can build up in her intestine so she needs to be on antibiotics continuously to prevent infection. Long term antibiotic use has its own set of challenges…some are better tolerated than others. With lots of help from OT, PT and Speech/Language pathologists, Halle has started to tolerate oral feeds in addition to her IV nutrition (meaning she’s only hooked up to IV nutrition for 16 hours per day now).
Kaelyn says that Calgary is where Halle began to thrive and grow. She was amazed at all the extra special touches at the hospital – from music therapy to the Stampede Parade! Having a swing set she could take Halle to in the summer allowed Kaelyn the opportunity to do something “normal” with her baby girl. And while Halle may not have known what Bingo night was about, Kaelyn was grateful for the opportunity to meet other families in the hospital and feel their support, as well.
There are still some challenges ahead for Halle. There’s a chance that the nerve cells in her bowel will mature, however, it’s also possible that some day she may need a bowel transplant. Long-term IV nutrition is also very hard on the liver so there’s a high likelihood that a liver transplant is also in her future. Kaelyn and Lindsay choose to not look too far into the future but enjoy the here and now with their little girl. They are grateful to the team at the ACH for getting them to the place where they can care for their baby girl at home back in Saskatchewan…with her team only a phone call away.
To hear more stories like this or to donate to the 2017 Caring for Kids Radiothon in support of the Alberta Children’s Hospital Foundation visit www.KidsRadiothon.com