It is with a heavy heart that I have to tell this story and reach out to friends, family, and even strangers for help. My younger sister Madelyne got the happiest news of her life when she found out she was pregnant on December 2nd, 2017. She moved back home, and in with my 10 year old son and I, so we could all be closer and to help with the baby. It was a very exciting time, until we received some devastating news on February 12th, 2018. Maddie was 14 weeks and 3 days. I accompanied Maddie to one of her ultrasound appointments, we were cutting up, laughing and making jokes, as sisters do. We were not prepared for the news we were about to receive. We were brought into a room with a table in the middle where we sat and waited for the doctor. When I think back to that moment I am more grateful for the patience and compassion of the doctor than anything. He let us know that Maddie's baby had accumulated fluid behind the back of the neck, medical term for "Cystic Hygroma". We immediately were filled with sorrow, rage and heartbreak. We started asking a million questions, faces filled with tears. The doctor explained that with a Cystic Hygroma, generally accompanies some type of Genetic Abnormality. We left the doctor with no answers, just tears and as much hope as we could cling to. We were to come back in a week for an Amniocentesis to confirm or deny a Genetic Abnormality. Maddie was officially 15 weeks when we went for the Amnio. During the two weeks of waiting, we had doctor appointments each week to continuously monitor the baby. It was a beautiful Monday morning, March 5th, 2018 when Maddie received a call from her High Risk Doctor in Memphis. The called confirmed our worst nightmare and biggest heartbreak. Maddie's baby girl was diagnosed with Turner Syndrome. Considered to be 99% fatal in the womb. Maddie was 17 weeks and 3 days. The Tuesday following the phone call was our regular weekly appointment to see the baby and hear her heart beat. At this appointment, the baby was big enough we could see a condition known as Hydrops (Heart Failure) forming. The fluid that was seen behind her neck at week 14, has started to drain into other major organs. The major organs are the baby's lungs (chest cavity), Skin Edema (puffy fluid filled skin) and fluid in her stomach. This fluid indicated that she would likely pass at some time and Maddie would have a stillbirth. We were broken. We were filled with anger. Asking why....wondering why us? Why our family? Haven't we been through enough? Still wondering all of these things. With this news, we were told that it was essential we are to be seen each week to monitor for a heartbeat. The fluid is so large that eventually baby girl will not be able to handle all of this pressure. Although as a family, we know doctors are not God. Doctors do not hold every answer. However, we must take this information for what it is and prepare ourselves for what is to possibly come. Currently, Maddie and baby girl have made it to week 22. At which, she is still in the same condition as she was in the prior weeks. Except for the fact that we were told we need to prepare ourselves because the likelihood of survival is now .9%.
At this moment, we are struggling. Emotionally, financially and mentally. Medicaid is not covering prior visits and prior hospital bills before BlakeLyne (Baby girl's name) was diagnosed with these issues. Maddie is not able to work due the amount of doctor visits, hospital visits and emotional stress that this has caused. As a family, we can only do so much. Our mother has done so much and has contributed as much as she can and we are so, so thankful for her. We are reaching out to anyone and everyone to share BlakeLyne's journey, her story and to help a fellow mommy. We know how hard and difficult life can be. If you can not donate, that is completely fine. We just ask that you share this and pray for our family. We are devastated. We are broken. To see one of our own, carry a child for so long and to not know our outcome, I can't imagine. I absolutely could not imagine the strength, heart and love she must have for her daughter to continue this fight with her. If you can donate, we appreciate you so much. We are so thankful for each and every one of you. We appreciate the love, prayers and support through this difficult time. We are Butterfly Strong!
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