Frozen in Heartache

People say you need to make the best decision for you, and that there’s not a wrong decision. But what do you do when there is not a right decision? By Liane I get it now. You never know true heartbreak until you know true heartbreak. I think back to the worst heartbreak I’ve ever been through and it seems like nothing compared to this. I won’t lie. I didn’t want to be pregnant, at first. It was too soon, too unexpected. I didn’t think we were ready, and I saw myself kissing all my fun trips and my selfish life goodbye. That, on top […]

A Different Kind of Strength

our baby had hygroma and hydrops

The doctor came in with a very sympathetic demeanor and started saying words like cystic hygroma and hydrops and fatal and miscarry and chromosomal issues. We completely lost it. “What do you mean?” I wanted to scream. I just saw a normal happy little moving baby on that screen a few minutes ago. By Jaclyn When our daughter was just 6 months old, we found out we were pregnant again. I’m not going to lie, I was horrified. I was still breastfeeding, trying to juggle being a new mom, working full time, and adjusting to marriage as a parent. Although I reminded myself daily how […]

Giving Sorrow Words

TFMR for Turner syndrom Ending a Wanted Pregnancy

Though the act of scheduling the termination—and the thought of actually showing up voluntarily to have it done—felt impossible to me, I didn’t ever really doubt our decision. I knew what we had to do, even though the thought of doing of it broke me in a way I didn’t think I could feel broken.   By Roseanne It was a Tuesday, my day off, and naptime when the phone call came. I was reading one last book to our daughter, cuddled up under a blanket in our bed. I didn’t recognize the number, but it was local, and I knew that maybe it was […]

Our Daughter, Gabriella Grace

Gabriella Grace - Termination for Turner Syndrome

I believe in mercy, and that’s what we hopefully gave our daughter. By Chelsea “Not Compatible with Life.” Crushing words, that confirmed our worst fears. I remember blinking my tear-filled eyes, praying that by some chance of a miracle our daughter would survive. After 20 weeks of pregnancy, and exhausting every possible avenue of testing, willing and praying for our daughter to survive, we were faced with the reality that she would not. The cystic hygroma and fluid had overtaken her body and she was struggling to survive. The Ultrasound I’ll never forget sitting in the OB’s office around my nine-week appointment, excited to hear the heartbeat […]

It Happened to Me

By T. C. I am so glad I discovered this site. Four years earlier, when I had Clara Rose, a Turner syndrome baby at 19 weeks gestation, I felt shocked and numb. I went through depression, then a state of denial, then developed symptoms of post-traumatic stress disorder. Only now am I realizing that there is no way for me to avoid the pain and grief associated with Clara’s birth and death. I know in my heart that I am very fortunate. Before losing Clara I had a son, and one year after losing Clara I went on to have a baby girl. It is not a lack of gratitude that […]

What is Turner syndrome?

Turner syndrome is a chromosomal disorder affecting development in girls. It is caused by a missing or incomplete X chromosome. Fetuses with Turner syndrome may exhibit marked growth delays, renal agenesis and olygohydraminos. Turner patients who survive to birth may have skeletal abnormalities, kidney problems and suffer premature ovarian failure. Heart defects are present in 33%-50% of Turner patients. Also common are obesity, diabetes, hypertension and osteoporosis. Many affected girls do not undergo puberty without estrogen hormone therapy. Some milder common affects of Turner syndrome can include short stature, webbed neck, low hairline at the back of the neck and puffiness or swelling. For more […]