October is Pregnancy & Infant Loss Awareness Month, and we know so many of you have endured heartbreaking experiences. Part of our passion and mission behind our #WeAreWeCan campaign is sharing the stories of the collective struggles that we as women face, and to recognize that we are not alone. This month, we're sharing the stories of women who've experienced pregnancy and infant loss in an effort to create awareness about the issue and to help other women who may be in similar situations feel supported, inspired, and less alone.
Today we're sharing the story of Victoria Tuione. Victoria gave birth to a healthy baby boy, Carter, in May 2013. A short time later, Carter was diagnosed with hydrocephalus, a buildup of fluid deep within the brain, and underwent a series of emergency operations. Despite some hopeful moments, Carter sadly passed away in August 2013. He was less than 3 months old. Read more of Victoria's tragic and courageous story below...
COULD YOU TELL US ABOUT YOUR INFANT LOSS STORY?
Our son, Carter Kauri Terata Tuione, was born on May 22, 2013 weighing in at 10 pounds. He was born completely healthy with no complications. On July 5, 2013, my sister had noticed his head was growing very big. I decided to take him into the urgent care immediately and from there we were sent to Primary Children's Hospital in Salt Lake City. The team was waiting for our arrival and immediately took us back to our room. From there we were taken in to do a CT scan. The doctors came back when the scans were in and told us that Carter had hydrocephalus and he needed to have an operation the following morning.
That morning came and everything went smoothly. They monitored him the next couple of days and discharged us. We were home for one night before we saw signs of the operation starting to fail. There was a blood clot in the tube that had been placed in his head. We were rushed back to the hospital and they operated on him again, placing an external shunt in his head so we knew the fluid was draining right. The fluids were draining but his head wasn't getting any smaller. They took multiple tests and still could not find out why his head was not getting any smaller.
They performed another operation that they thought would work and wouldn't need a shunt in his head. The operation was longer than what we were told. We finally got the call that he was out of surgery, and we went back to recovery to see him. His head had gone down to its normal size and he looked so much better. We thought it was going to be good from there. But it failed that night. Doctors and nurses were coming in and out of his room all night because his head started to grow big again. He went back in for a fourth operation the following morning to place another shunt on the other side of his head. More tests were taken.
On Thursday, July 25, 2013 we found out that Carter had tumors on his spine that were growing aggressively up to his brain. The following morning he went in for the fifth operation for a biopsy. Doctors came back on July 30, 2013 relaying the news of what the tumor was and how my son was the second known case of this type of tumor and there was still no treatment, but they were willing to try something they thought would help. My husband and I sat in a conference room with a big table full of doctors and nurses. The doctors told us that they could start him on chemo but wasn't guaranteed it would work.
Carter started chemo that evening. That week we received bad news after bad news. He was declining fast. On Sunday, August 4, 2013, my husband gave him a beautiful blessing releasing him back to our Father in Heaven. He slipped away that night just after 10 pm surrounded by his loved ones that filled his room and the hallways of the hospital.
IN WHAT WAYS HAS THIS EXPERIENCE SHAPED YOU?
This experience has helped me a lot in everything that I do everyday. Going through what we went through has really opened my eyes to everything and the way I do things. I always think, "Would my son be happy if I did this?" or "Would he be upset?" It has helped me become the mother that I am today to our four kids at home and it has definitely played a big part in my role as a wife.
HOW OR WHERE DID YOU FIND SUPPORT, PEACE, AND COMFORT FOLLOWING YOUR EXPERIENCE?
Our Father in Heaven. He helped me prepare for it. He comforted me when I needed it the most. My husband was there every day and every night. Although he still had to work, he always made sure he was THERE. Our oldest daughter, Calia, would come up to the hospital with my mum and she just made our days brighter. She was too young to understand what was happening but she is what kept us going. She helped us stay strong.
FOR OTHER WOMEN WHO HAVE EXPERIENCED INFANT LOSS AND MAY BE STRUGGLING, WHAT ADVICE OR WORDS OF ENCOURAGEMENT WOULD YOU OFFER THEM?
WHAT'S ONE THING ABOUT INFANT LOSS YOU'D LIKE PEOPLE TO KNOW?