Imagine having two children each born with a life threatening medical condition. That’s exactly what happened to the Hube family, and as a result, they have called Ronald McDonald House Charities® Northern Alberta their home away from home twice.
Tonja and Nehemiah Hube are parents to Ruth, Mark, Esther, Mary and Jeremiah. At Tonja’s 19 week ultrasound in 2008, doctors noticed an abnormality which was later diagnosed as Gastroschisis. They learned that Esther would be born with a condition where her stomach lining and layer of skin are not fully formed, resulting in organs forming on the outside of the body. It requires a treatment where after delivery the bowels are hung above the baby in a mesh bag called a ‘silo’ so that gravity can help the bowel into its proper place. Once the bowel is in positions, surgery is required to close the skin. There can also be complications after birth, such as feeding delays, blockages and infection.
After Ester’s diagnosis the doctor told the Hubes that they would never see another Gastroschisis diagnosis. There is a 1 in 5,000 chance of being born with Gastroschisis. Those words would be remembered with some irony four years later when an ultrasound showed that Jeremiah would be born with the same condition.
Both Esther and Jeremiah have had long journeys and a full range of serious complications. Esther underwent six major surgeries in the first half of her life. Jeremiah’s journey had its own challenges. Though he required fewer surgeries than Esther, his life was in jeopardy several times as his body struggled to make room for his organs. He battled fluid balance, at one point gaining four fluid pounds in less than a day.
By nothing less than a series of miracles, both Esther and Jeremiah survived their ordeals. The future holds another surgery for Jeremiah in 2014 and consistent checkups for each of the children. The family home is about five hours north of Edmonton in Peace Country; they have spent over a year of their lives between home and RMHCNA, their home away from home. The family’s return home has been both a blessing and a challenge. Tonja is happy seeing her children together every day, but getting everybody back on the same page and into the routine of a new normal has been the biggest challenge.
When she reflects on what it has meant to her family to be so far away from home, Tonja shares a great deal of gratitude for the availability of RMHCNA to families like hers:
“At first, you may feel like an outsider. You soon find yourself as part of an extended family community. I don’t know what my family would have done without the House. We would have been alone without support and community. I missed all of the family birthdays in 2009 except Mark’s. We were able to hold his 2nd birthday celebration as a family at the House – I was even able to bake the cake! That would never have been possible in a hotel.
“The House’s meal program was my favourite. It’s one big thing off your mind as a mom to have volunteers come in and cook a meal. I love it and it has been such a huge blessing! It has been great to watch the dinners grow from being served one night a week to almost every night of the week! There was one night when the Oilers wives came and served Home for Dinner. Mark received an Oilers scarf, a hat and some hockey cards that evening. They are still among his most treasured possessions. The kids loved the meals, too. They loved all the volunteers and loved eating on the train in the kitchen. They also grew very fond of the constant availability of Crave cupcakes!”
Because of visiting the House for two different siblings, the kids were able to visit the RMHCNA quilt room twice and choose a quilt. Esther and Mary sleep with their two quilts every night, and nobody is allowed to even touch Ruth’s quilts! They will serve as a lifelong reminder of their time and fun at RMHCNA.