The Hardest and Easiest Decision

Posted on Posted in Hypoplastic Left Heart Syndrome, Stories, Trisomy 18 (Edward's syndrome)

By Ava’s Mom Today my mom called me about my cousin and his wife who are expecting their first baby. We are very happy for them. Their baby is breech, so they’ve  scheduled a c-section which will take place on my second child’s due date. It hit me that I should be planning a first birthday party. It also hit me that for my cousin’s wife, the worst thing happening is she can’t have the vaginal birth she wanted. I have had three children vaginally, but only two are living. My first pregnancy—a chemical pregnancy—ended before it really began.  I didn’t think of it as […]

Acceptance

Posted on Posted in Religious Perspectives, Skeletal Dysplasia, Stories

by T.T. In a week, we will be marking one year since we said goodbye, and I wanted to reflect upon it all. It took nearly nine months for me to even start to come to terms with what happened to our family in the last year, and the decisions we made. It led to a new phase of tears, but it felt somewhat different than in the early days. For a long time, I struggled to even allow myself to grieve the loss of our sweet baby, Daniel, because of the massive guilt I felt. Though raised Catholic, I’m totally liberal in ways that […]

Malachi, My Angel

Posted on Posted in Neural Tube Defects, Religious Perspectives, Spina Bifida

by S.A. The day you realise your world as you know it has changed forever is a startling one. One that hits you like a ton of bricks. One when you question how the rest of the world is able to keep moving and functioning, oblivious to your the pain and suffering. That fateful day for me was the 10th November 2016. I received the news that my expectant child, a precious baby boy, had an open spina bifida and Arnold Chari Malformation Type 2. Even as those words roll out my mouth now, I still cannot believe that this was and is my reality, […]

Ethan’s Story

Posted on Posted in Congenital Heart Defects, D&E, Religious Perspectives, Stories, Trisomy 21 (Down syndrome)

By C.J. This is Ethan’s story–my youngest son. It started out much like I thought for a third pregnancy. I have two healthy children, a girl, age five, and a boy, age three. I was sick with morning/all day sickness. When you are that sick and you have been through it twice before, it is hard to be too excited, but my husband and children were over the moon about the new baby. My son kept looking at my stomach and saying “is it getting bigger?” While my daughter began kissing my growing belly and writing “I love you” cards for her new sibling. My […]

Hope Crushed

Posted on Posted in Stories, Trisomy 21 (Down syndrome)

By J.G. After having a miscarriage at eight weeks this year, I found out I was pregnant again at around six weeks. I was excited and nervous to be pregnant so soon after miscarrying. I made it past the eight weeks scary zone and I had my first appointment with the genetics counselor at 12 weeks to determine any risks associated with my pregnancy. We opted to do an ultrasound and the new cell-free fetal DNA (Panorama) testing. The ultrasound looked wonderful and showed no soft markers for any kind of birth defects. I was excited that everything looked good and I was almost on […]

Our Baby Boy

Posted on Posted in D&E, Stories, Trisomy 21 (Down syndrome)

By J.D. I have polycystic ovary syndrome (PCOS), so when my husband and I decided to try getting pregnant earlier this year, we had a difficult time finding that “window” due to my irregular cycles. We were referred to a fertility office where we started months of testing to narrow down the issue and come up with a plan. My husband tested fine and it was determined that I had plenty of eggs, they just weren’t ovulating themselves. We would do ovulation induction with medications and timed intercourse. Our first cycle worked! I couldn’t believe it. I stared at the stick in pure disbelief then […]

A Heartbreaking Journey

Posted on Posted in Trisomy 18 (Edward's syndrome)

By A.R. Our angel Stella Marie was diagnosed with Trisomy 18. This is the story of my heartbreaking journey as I fought against my own faith. I always knew I wanted to get married, have a big family, be able to stay home with my children and then go back to work when they were in school. That was my dream. And although my life took many detours, last October I thought, boy my dreams are all coming true, I am so blessed. I was married to a wonderful man, I had three children ages fourteen, three and one, and I was staying home with […]

Will You Let Her Go?

Posted on Posted in D&E, Stories, Trisomy 18 (Edward's syndrome)

By Vanessa Spiritoso When I was pregnant with baby number three, I wasn’t excited but I wasn’t unhappy. My mind was preoccupied with running after my two boys who are under the age of five. I really didn’t have time to focus on baby number three. Some days I felt pregnant, but most days I did not. I remember telling my family that I knew I was pregnant but it didn’t feel like it. I even remember talking to my baby asking, “Are you in there?” because I didn’t feel like I felt when I was pregnant with the boys. I didn’t have that aggressive […]

Chloe Fay

Posted on Posted in Hydrocephalus, Induction/L&D, Neural Tube Defects, Spina Bifida, Stories

By Zena Mason To the newly bereaved parent: please know that you’re not alone. I want to share my story of medical termination in Australia. This was extremely hard to write and share. In a world full of supportive people we have certainly felt alone because it’s so taboo and people are scared to talk about anything to do with the loss of a child. Unfortunately, we live in a world where we as humans are judged for what shoes we wear, what house we live in and whether we like boys or girls, so when we had to make a heart-wrenching choice it became apparent […]