ORONOCO, Minn. (KTTC) – An Olmsted County couple are remembering their twin daughters this week, one day ahead of World Twin to Twin Transfusion Syndrome Awareness Day.
Twin to Twin Transfusion Syndrome, also known as TTTS, is a rare and serious condition that can happen in pregnancies when identical twins or triplets share a placenta.
According to the Cincinnati Children’s Hospital,
“unusual blood vessel connections form in the placenta which creates an uneven blood flow uneven between the babies. One twin, called the donor, becomes dehydrated. While the other, the recipient, develops high blood pressure and makes too much urine, which over fills the amniotic sac. That excess fluid can put a strain on the recipient twin’s heart, which sometimes leads to heart failure.”
But TTTS can be deadly for both twins (or triplets) and in some cases surgery is necessary to save them.
Marie Reisdorfer lost her twin daughters, Amelia and Nora, to the disease even after having a surgery more than two years ago in September 2016.
“I think the raw times, and the times you don’t want to get out of bed, they start to get easier. I think the feeling of emptiness and wishing they were here is never going to go away. You’re always gonna long for them and wonder the what if game: what they’d look like and what they’d do,” she said.
Reisdorfer went to a Twin Cities hospital to get surgery to cut some of the vessels between the twins with the hope that it would correct the problem and her pregnancy would continue on as planned. “A week after everything was looking good. At that point, at about 19.5 weeks, we learned our Amelia passed away.”
Their other twin, Nora, would die two weeks later.
“It wasn’t easy. Especially since we had children. You try to focus on doing things in their honor.”
Two years after her twin daughter’s deaths, Reisdorder spends her free time with her three living children while also volunteering with the TTTS Foundation. Her role with the organization is to help to create bereavement packages for families going through a similar tragedy.
“We want to make them proud to of the things we’re doing in their memory.”
She still includes the twins in her family life. When it’s their birthday (September 12) she’ll bake a cake, and for Christmas she’ll hang up stockings and ornaments with Nora and Amelia’s name on them. Her three living children are too young to understand what happened, but eventually she’ll tell them all about their two sisters who live in heaven.
The Mayo Clinic is helping to raise awareness about TTTS. They will light the Plummer Building in blue Friday night in honor of families, like Reisdorfer’s, who’ve lost children because of the disease.
Additionally, Carroll’s Corn, a small Rochester business, is giving to the TTTS Awareness Day this year. From December 7 until December 9, the business is offering a 15% discount if you buy a bag of popcorn. Carroll’s Corn will match that 15% donation with their own in order to help fight against this horrible disease.