By Jane Kent, Special to Postmedia
For most parents, dealing with the ‘terrible twos’ can be challenging on a good day as their toddler finds their independence.
For Trevor and Kylie Mielke of Chesley, however, having to sit by and watch their daughter Madison not be able to walk, play or interact with the world as she would like to has been an ordeal.
Madison, who is 2.5 years old, has recently had a second necessary surgery for a condition called developmental hip dysplasia, putting her in a near full body cast for six weeks.
Developmental dysplasia of the hip (DDH) is a health problem of the hip joint. It’s when the joint hasn’t formed normally, so it doesn’t work as it should. DDH is present at birth and is more common in girls than boys, but it can take some time to diagnose. In a normal hip joint, the top of the thighbone (femur) fits snugly into the hip socket. In a child with DDH, the hip socket is too shallow.
Madison’s journey began when they “noticed that she was walking on her tiptoes when she started walking at 14 months,” explains Trevor. They went to a chiropractor for a while but then it was recommended they go to their family doctor. “She was then referred to McMaster Children’s Hospital at 18 months, and officially diagnosed,” says Kylie.
Madison’s first surgery took place at 19 months. While difficult, it was far easier due to her younger age, compared to this time around, says Kylie.
After going back for x-rays and a check-up, doctors said the bones were still not doing what they needed to do and a second surgery was required. On Sept. 9, the Mielke family went to Hamilton to stay at Ronald McDonald House while Madison went in for surgery at McMaster Children’s Hospital.
“This time she had both procedures (femur and pelvic osteotomy), a few tendons cut because she’s very stiff and tight and also a blood transfusion. This is more than what was intended,” says Kylie. The procedures took 5.5 hours. Approximately 1.5 inches were shaved off of the femur, meaning Madison will have one leg longer than the other.
Madison is now in a spica cast, which goes from her ankles to her armpits. She is able to use her upper body but is otherwise in a lying position on her back or stomach until the cast comes off in another 5.5 weeks.
While they did everything they could to prepare themselves and Madison, they said that this time has been far worse. While still in hospital for a few days afterward, she was still on an epidural and catheter, Madison had trouble sleeping and began biting and pulling her hair out in anger.
“She just wants to do it by herself. Walk, crawl, stand up, go upstairs… you name it. This is a tough age. She was finding her independence and it was taken away and she is too young to understand what is happening,” Kylie says.
Doctors prescribed Valium to help Madison sleep and to help with her frustration and anxiety. Now at home, Kylie said the last three days have been significantly better. “She was giggling and talking, I saw my girl coming back,” she says.
Both parents are exhausted, as Madison often doesn’t go back to sleep after she has to be woken up for diapering, medication and to rotate her. “It is like having a newborn again,” says Kylie.
While being a very emotional ordeal for the family, there have been some unexpected financial impacts as well. Both parents intended to take the eight-week unpaid medical leave that the government allows. The leave is flexible, employees can work when they can, such as doing part-time hours and their position must remain open for them.
Kylie, who does administration and HR for Calhoun Superstructure in Tara, planned to stay home for the eight weeks as Madison has been “more Mommy Mommy this time,” says Kylie. “They have been so kind and helpful,” Kylie says of her employers.
Trevor planned to also take the unpaid leave from his job, doing a combination of part-time work and working at home. However, his employer (whom he declined to name) refused to accommodate the request, despite intervention by the Ontario Labour Board.
As a result, Trevor had to quit. “This is my child’s health,” he says. “Am I just going to leave these two at home alone? Of course not.” He does not qualify for any unemployment benefits because he resigned from his position.
Instead, Kylie has been trying to go into the office for a few hours here and there when Madison is having a good day, so that there is some income coming into the home. “I want to be home with her, but I just can’t be all the time. We need to pay bills.”
While the surgery itself was covered, the costs for Madison’s treatment and recovery have been racking up for Trevor and Kylie. Kylie does have some benefits through her job but many things are not fully covered or covered at all. They had to pay out-of-pocket for travel costs for appointments in the city, prescriptions and supplies — particularly diapers.
Madison’s spica cast has a hole in the bottom to allow for diaper changes. However, they must be done frequently to avoid any moisture being trapped inside the cast and potentially causing skin problems and discomfort. Each change requires three layers: a Poise pad, a diaper and an adult Depends. Madison then must lay on her tummy with a fan blowing into the cast to ensure total dryness.
Once out of the cast, there will be further costs for physiotherapy, “tonnes of physio,” says Kylie, as Madison will have to learn how to walk all over again. It is common for toddlers who endure something like this to experience trauma and the Mielke’s will likely need to seek play therapy for Madison.
The Mielke’s have lived in Chesley for about five years. Trevor’s family is in Peterborough and Kylie’s is in Caledon. Family members have been making trips up to help, but “in the beginning, it was so rough there was nothing anyone could do,” says Kylie. “The first time around I was like ‘I don’t need help,’ but when it happened again, I was like, ‘ok I really need help now.’”
Madison’s aunt has started a gofundme page called “Maddie’s 2nd Set Of Fancy Pants” to get some financial support. They have also been grateful to receive some Chesley Grocery Store gift cards and would welcome diaper donations: adult Depends size small, Pampers size 6 diapers or Poise liner pads size 5 or 6.
For Madison, her journey is far from over. If she did not have this surgery now, she “would have had severe arthritis in her hips by the time she was four or five, ” says Trevor. She will also have to have another surgery when she is 15 to 20 years old.
“She is the bravest person I know,” says Kylie.