Voices of PKD: Kristina Grant, Brandon MB
The diagnosis of autosomal dominant polycystic kidney disease (ADPKD) was confirmed when she was only 6 months old through genetic testing. She doesn’t present in the typical ADPKD fashion and instead her PKD more closely resembles the autosomal recessive form of the disease.
Hailey-Ann has severely enlarged kidneys with current measurements of approximately 13cm each. Both kidneys are severely inundated with cysts; this is the doctor’s way of saying that she has way too many cysts for them to possibly count. In addition to the enlarged kidneys, Hailey-Ann was diagnosed with hypertension at only 10 days of age. Currently the only treatment Hailey-Ann undergoes involves medication for her hypertension, and we choose to follow a low sodium diet to help control her blood pressure.
Hailey-Ann spent the first 4 years of her life living on Vancouver Island. Just this past year, her dad was posted to CFB Shilo and the whole family moved to rural Manitoba. Now Hailey-Ann lives on a 5-acre hobby farm and enjoys every aspect of that lifestyle. This includes weeding the vegetable garden, harvesting vegetables and caring for all her animals (10 chickens, a goat and a border collie/blue heeler puppy named Skye). She is making friends through activities at our local Military Family Resource Centre, and loves going to play dates with a variety of little girls on base. Some of Hailey-Ann’s favourite activities include horseback riding, crafts, and watching hockey with her daddy or curling with mommy. She loves a lot of the typical little girl things like horses, baking with mommy and playing with her little brother and puppy. She is also absolutely obsessed with the Calgary Flames (which she calls “fire hockey”) and the Winnipeg Jets. The only real indication that she is a child living with medical complications is the fact that she absolutely adores going to Children’s Hospital for appointments. She can’t stand spiders, crickets or getting blood work.
As a family raising a child with PKD, we face a lot of additional struggles. There is a lot of anxiety around what her future holds, in addition to the trauma that the family has to cope with related to her birth, the uncertainty of the first year and from the repeated ER visits due to medical complications. Presently doctors believe that Hailey-Ann will need a kidney transplant in late childhood. Now that she is older, we have to juggle her large number of medical appointments where we have to travel 2.5 hours each way, as well as the financial burden of travel to medical appointments and obtaining the medication. Then there’s the uncertainty of whether some of her additional challenges are related to having ADPKD or if they are due to her having yet another medical condition.
My hope for her future is that she is able to live her dreams and live a healthy life. It is our number one hope for all PKD patients that we discover a cure in our lifetime.
We feel it is so important to share our story with the PKD Foundation of Canada and PKD community to help raise awareness to the fact that PKD exists, and that children can be affected by ADPKD in addition to adults. So many in the medical profession are shocked by the fact that Hailey-Ann has ADPKD, let alone the fact that the condition was found before she was even born.