Words cannot begin to express how deeply grateful I am that I found the Trisomy18 Foundation. When I was 6 months pregnant we discovered that my identical twin girls both had trisomy 18. One twin had obvious physical abnormalities that would be incompatible with life if no surgical intervention was done (which no MD would do once the T18 diagnosis was given), and the other showed no physical problems in utero, which led us to want to continue the pregnancy and give our girls every possible chance at survival. The foundation, first and foremost, allowed me to connect with other families who had been through similar experiences, which was huge for me because I felt so alone with this diagnosis- I had never heard of Trisomy 18 before and neither did any of my friends or family members. This proved even more important for me after we lost our twins after birth because what helped me most with the grieving process, even now- 7 years later, was connecting with other parents who had been through this too. Even now I have awesome lifelong friendships with moms who have gone through my similar experience. We contact each other when we need support, and we've been able to share our lives and experiences with each other as we deal with life going on after the death of our children. And I cannot say enough about the foundations president, Victoria Miller. The care and compassion she gave is in our darkest and scariest times made such a world of difference. She even called me personally and gave me tips and advice on how to advocate for my baby girls when they were born. She was absolutely amazing! Although my girls didn't live long in this earth after they were born, the Trisomy 18 Foundation has been a life saver for me and I am thankful every day that myself and countless other families out there continue to have it as a resource.
I was 19 weeks pregnant with my daughter when I was told that she had a birth defect called Trisomy 18. I didn't even know what that was never mind what it would mean for my daughter's survival. Everyone around me told me not to go on the internet but that was the place I found the most information and the most compassion I have ever received. After the loss of my daughter the Trisomy 18 Foundation brought me together with the most amazing women I could have ever met. This foundation has helped me through the loss of my daughter. They were the ones who understood exactly how I felt. I didn't find this with family or friends, I found this in a community of grieving mothers who lost their children the same way. I don't know where I would be today without their support and guidance. Thank you to all those behind this wonderful organization!
Several years after having healthy twins through assisted reproduction we found ourselves expecting a third child. We knew there were risks so decided to see a specialist and have testing done. All early indications were that our daughter was growing well and healthy. It was not until 17 weeks that we were told that our child in-fact had Trisomy 18 and was given a grim prognosis for birth. We were devastated and also faced with how to let our children know that their little sister was going to leave us. The Trisomy 18 Foundation boards were a lifeline for me, holding me up when I could not stand on my own, guiding me when the medical profession had turned away, loving me and my child when I thought no one cared. All of the members, founders and volunteers make this site a valuable resource to all families faced with this disorder that often takes our child before we have a chance to know them. They allow parents to not only honor those precious angels from the moment they hear the heart-stopping words that their child may never take a first breath, but offer so much more information, resources and a sense of direction and purpose, and the support doesn't end when the child is gone. The Trisomy 18 Foundation is an oasis in a storm where parents can stop, breath and remember the important parts of life and living it and to build memories as a family, to embrace their unborn child, or to let them go, during this life changing event in their lives, but also allows those same parents the opportunity to give back to others in need as they are willing and comfortable doing with support and guidance. I feel my journey through loss is very different from what it might, no, would have been without this wonderful Foundation. Thank you to all who contribute to making it what it is.
When we found out 5 years ago that one of our twins had Trisomy 18, and our other twin was healthy, it was the most lonely feeling I've ever had. We were immediately thrust into a heart wrenching horror that seemed to have no beginning and definitely no end other than a seeming end to our lives as we knew it. We had no idea what to do, how to think, how to fight for this child we had already come to love. Then I found the Trisomy 18 Foundation. I not only was able to find all the information on what Trisomy 18 WAS, I was able to turn this horror into something that was as beautiful as it could have been, and leave us, 5 years later, with memories so precious, and memories that have less pain. Day or night there were people on the message boards who could offer advice on any and everything, who were always willing to lend an ear, support, and friendship. They KNEW what we were going through. Some of those women I am friends with to this day. If there was a specific question, the staff...the Foundation itself was always there to assist, answer and aid in any way they could. I have learned that Trisomy 18 is the killer of dreams. Through the Trisomy 18 Foundation, I have learned that I AM my childs voice, I AM the keeper of her legacy, and I CAN plan her a life or death that matters, that is important, that will help me remember her with less pain. I am forever grateful for the Trisomy 18 Foundation.
I lost my beloved 1st son in October of 2007 after a Trisomy 18 diagnosis. I knew nothing about trisomy 18 and knew no one else that had walked this heartbreaking road. Through the Trisomy 18 Foundation, I found much more information than even my doctor could offer me and more importantly, I found a community of families that had walked in my shoes and could share and cry and heal with me. This is an organization that opens its arms to all families affected by trisomy 18, no matter the choices each family makes. Four years later, my heart is much healed, but I remain an avid supporter of this wonderful, selfless organization.