Through their journey and inspired by their personal struggles, the Tummers knew that they wanted to help others facing similar issues.
They founded Miles for Miracles, an annual fundraiser in their town of Listowel, Ontario. Now celebrating its tenth anniversary, the fundraiser’s purpose is to raise awareness about the life changing work being done at the Ontario Fetal Centre, a joint partnership between Mount Sinai Hospital and Sick Kids, with all proceeds being donated to the centre.
When the Tummers first received their diagnosis a decade ago, there was little information regarding the syndrome available. “My doctor gave me no information about TTTS but I knew the condition existed and its name. My sister in-law lived in the same town as a family who had it.” Jodie and her husband immediately knew that they had to turn their journey into hope for other families. “I want to be the support for people that I didn’t get.” Jodie says.
TTTS is a rare condition in which the sharing of nutrient-rich blood among identical fetuses is imbalanced in their shared placenta. It also is one of few conditions that may be reversed in the womb through surgery.
The Tummers were referred to Dr. Greg Ryan, Head of the Ontario Fetal Centre and a world-leading maternal fetal medicine surgeon. He recommended a procedure called fetoscopic laser ablation, where Dr. Ryan would enter Jodie’s uterus and perform a minimally invasive surgery on the placenta. This would separate the twins in the placenta so that they could receive their own nutrients. Unfortunately, the damage to Cole’s heart was too severe and he passed away the day after surgery. That same day, the Tummers were told Cameron needed an intrauterine blood transfusion to survive.
The Iley and Wagler twins. Two sets of TTTS twins who participated in the Miles for Miracles scavenger hunt last year.
At 26 weeks, Jodie once again returned to Mount Sinai – her water broke early. Physicians worked to stabilize her and then transferred her to a hospital closer to home, where weeks later she safely gave birth to her surviving twin, Cameron.
It was also important for the Tummers to give back to the place that did everything it could for Cole and Cameron. This year, Miles for Miracles takes place on November 2, 2019. The event features a Christmas gift and craft show, a five-kilometer walk, a scavenger hunt, and a silent auction.
Jodie’s best piece of advice for parents going through a similar journey is to ask as many questions as possible, become informed and get involved in support groups.
“TTTS isn’t the end of the world. There’s always hope.”
