Just when Charmaine Winsor was 25 weeks pregnant, She already knew something wasn’t right with her twins.
After an initial doctor’s appointment told her that the pain and bloating she was experiencing was normal for a mom carrying two babies, days later a cardiologist delivered devastating news: the twins were suffering from Twin to Twin Transfusion Syndrome.
TTTS is a disease of the placenta that can occur in identical twin pregnancies when vital nutrients from the placenta aren’t shared equally, which causes one twin to have a decreased blood volume.
Charmaine and her husband, Cameron, were told that their baby boys wouldn’t survive the night if they didn’t deliver them. Despite Charmaine’s fears of the effect of a premature birth, Connor and Levi were born two hours after she was admitted to the hospital for an emergency C-section.
TTTS is a heartbreaking disease and I know if I was given more information on it early in my pregnancy, I may have been able to try and fix it,”
TTTS had taken its toll on Connor’s body and though both boys were fighting for their lives, Connor was by far the most sick. Seven days later, Connor passed away and a member of hospital staff immediately placed the boys side by side. They had arranged for Heartfelt, a charity network of photographers who volunteer to capture images for parents of terminally ill children or those who have experienced a stillbirth, to come in.
“They placed Connor with Levi straight away and Heartfelt took amazing photos of my boys together for the first and last time,” Charmaine said. “That photo is my favorite because it shows that they got to touch each other and be that close again. It’s a photo I’ll always cherish.”
After a frightening 156-day fight in the NICU, Levi was eventually able to go home. His parents are sharing their difficult journey in the hopes of raising awareness for TTTS. “It’s a horrible disease to go through and though there are many miracle stories of the amazing babies that live, there’s also the other side of the disease — thousands of twinless twins out there from TTTS,”
Charmaine said. “Infant loss and stillbirth are still very taboo subjects and parents shouldn’t be ashamed to share their babies whether they are alive or have grown their wings.”
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