severe spina bifida - daddys shoes

Daddy’s Shoes

Posted on Posted in Neural Tube Defects, Spina Bifida

We called several specialists around the country and Dana spent an entire day on the phone with the four big players in the fetal surgery specialty. In some cases, they can do surgery on the baby while still in-utero. All the specialists looked at our case of severe spina bifida and gave our son bleak prognoses.

mosiac trisomy 13 - what nobody tells you

What Nobody Tells You

Posted on Posted in Hypoplastic Left Heart Syndrome, Trisomy 13 (Patau syndrome)

Prenatal Diagnosis: Mosiac Trisomy 13 and HLHS Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. By Gina McGarey I didn’t want kids until I was in my 30s. This past summer we started trying. Fast forward about 4 months and we found out I was pregnant. We were both super excited and planned all of these different ways to tell our parents, siblings, and friends (I have some amazing videos of us telling most of them). This would be the first grandchild for all of our parents and the first great-grandchild for half of […]

From My Side of the Picket Sign

Posted on Posted in Anencephaly, Neural Tube Defects, Opinion, Stories

By Carissa Waldner I see you day after day holding up the sign that continually haunts me, “Babies killed here.” I watch as your supporters show up on the weekends and stand with you, holding pictures of fetuses, showcasing the number of days and hours it takes for a human heart to start beating. Your eyes are cold and judgmental. They pierce through me as I drive by. I avert mine day after day, knowing how you’d feel if you knew my story. Every morning I drive past you with two children in the backseat of my minivan. I spend my days making lunches, driving […]

Mariana

Posted on Posted in Fetal Hydrops, Induction/L&D, Stories, Trisomy 21 (Down syndrome)

By Andrea My husband and I were excited when we found out that I was pregnant. We have a three-year-old daughter and this baby would have been born around the same time our daughter started kindergarten. Everything happened as planned; it was a very expected pregnancy. The first ultrasound was at 12 weeks. I wasn’t very concerned. It was probably because we didn’t have any problems during our first pregnancy and our daughter was born healthy. Even though my husband really wanted to be there, he couldn’t make it for that ultrasound. Maybe that wasn’t such a bad thing. I completely broke down when I […]

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 […]