Parent Blog: Kendra Mennen
In their words
Mason City, Iowa
Heather was referred to University of Iowa Stead Family Children’s Hospital with a distended abdomen when she was about 8 months old. She was under the care of the hospital’s gastrointestinal team two months later when she needed to be flown by AirCare from a Mason City hospital to Iowa City.
At that time we spent five weeks in the children's hospital to reach a diagnosis. She was diagnosed with Pseudo-obstruction Motility Disorder as well as an enlarged bladder. This allowed us to meet the urology and nephrology teams there. She has been followed by them since then.
When she was around 9 years old, Heather was admitted to the Pediatric Intensive Care Unit (PICU) with a thiamin deficiency. That’s when we were introduced to the neurology and cardiology teams. The thiamin deficiency caused her to go into congestive heart failure and she lost the use of her legs when the deficiency attacked the muscle. Once they found the deficiency and began to correct it, she underwent physical therapy (PT) to try to regain the use of her legs, and was also followed closely by cardiology. She was ultimately diagnosed with Hypertrophic Cardiomyopathy.
In a matter of three months with PT she was able to walk again with a walker and has since gotten rid of that. Five years later, she is now a cheerleader at Newman Catholic High School. This condition also caused a delay in her growth hormones which led us to see an endocrinologist. Heather has grown seven inches being on the hormone shots. She is doing well and has exceeded all expectations her doctors have set for her.
The nurses and child life teams do an amazing job helping the children to forget a bit about why they are there. Any child, even those stuck in their rooms, are included in games, crafts, music therapy, and movies – even bingo that the children can call in to win. They also provide much needed support to the family, including parents as well as siblings.
The hospital is a great facility. The medical teams there are outstanding and always ready to assist any way possible. The central line nurses are always willing to help. We were planning a family trip to Virginia and nurse Mary Beth called the children's hospital that was close to where we were going and spoke with their line team to tell them about Heather so if we had any problems while we were there, they were aware of her and her condition and central line info. They go above and beyond to help the families even after discharge. Very kid- and family-friendly.