Articles

The Gulf Between Grief & The Regular World

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By Kate C. It has been two years since my husband and I left our home, eldest daughter, and entire support network behind on a last-minute flight to the Rocky Mountains. There, there was a doctor who would help us let our baby girl go. With a single injection, he released her spirit from its broken body, then, over the course of several days, safely, carefully, he released her body from mine, so that I didn’t have to follow my baby into the abyss. I birthed her, still and whole, exactly one week after an MRI shattered our world. People sometimes ask me what that was […]

arthrogryposis

What is Arthrogryposis?

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Arthrogryposis multiplex congenita (AMC), or arthrogryposis, involves congenital joint curvature in two or more areas of the body. The name translated from is Greek is literally “Hooking Joints.” It causes abnormal fibrosis of the muscle tissue, resulting in shortened muscles and preventing extending or flexing of the affected joints. There are three types of Arthogryposis: amyoplasia, distal arthrogryposis, and syndromic. Amyoplasia features severe joint contractures and muscle weakness. Distal arthrogryposis mainly involves the hands and feet. Syndromic is a primary neurological or muscle disease. It may also be called Autosomal Recessive Amyoplasia. For further information, visit: AANEM.org – Arthrogryposis Multiplex Congenita NORD (National Organization of […]

Articles

Us and Them

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My living child has the same disability that led me to abort later pregnancies

I felt I was standing on some imaginary line with one foot in two very different worlds. I felt parents who terminated focused on the bad to get through, and parents who had a living child with a disability or fatal illness focused on the good to get through.

Alobar Holoprosencephaly

Our Hailey Judith

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By Jess 311 I couldn’t believe it when the home pregnancy test was positive. I thought surely it would not happen so soon. It had only been two months since we started trying. I can’t describe how excited I was, but I thought for sure it couldn’t be true, that I must have let it sit for too long. Well, three more tests with lines and one digital test later and we new for sure. We were having our first child. We couldn’t wait to tell people. I couldn’t wait to get to the doctor to hear the heartbeat. I’ll never forget the first time […]

Diagnosis Information

What is CCAM?

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Congenital Cystic Adenomatiod Malformation or CCAM is a fluid filled (cystic) or solid mass lung tumor. A CCAM diagnosis can endanger the health of the mother. If the condition results in massive fluid retention (called fetal hydrops or hydrops fetalis) the mother may develop a similar condition (maternal mirror syndrome) and show signs of preeclampsia. Treatment options and outcomes depend on the size and severity of the CCAM lesions, and whether the mother develops maternal mirror syndrome or preeclampsia. Over the course of a pregnancy, the size of the lesions can change dramatically. Serious findings may be discovered via ultrasound such as absence of lung […]

Opinion

Deposition in the Night

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By Kate C. Originally posted at Makin’ Babies. Shared by permission. Ten months have passed since losing my baby. The anniversary is approaching. My deadline for filing a grievance with my insurance company is closing in. Spring is blooming. Soon, I won’t have to count the seasons with memories of last year’s useless gestational milestones. Soon, I will get a fresh start. I no longer feel broken. Wounded, healing, but not broken. I feel exactly where I should be with the infant loss piece of my tragedy. I am full of sadness and acceptance for my dead baby, the little handful of ashes on my […]

Articles

Old-Testament Thoughts

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I love The Old Testament. I do! I love it now for all the reasons I hated it as a sensitive, compassionate little girl. Life is so hard, people are so bad, and God is cruel, and just a little bit nuts. It’s crazy, and I love it.

Diagnosis Information

What is Hyperemis Gravidarium?

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There is a marked difference between common “morning sickness” and severe Hyperemesis Gravidarium (HG). Hyperemesis Gravidarium can be mild, moderate or severe, but the severe version of this rare and debilitiating pregnancy complication is what we’re concerned with here. In severe Hyperemesis Gravidarium, the mother experiences constant, incapacitating nausea. It can be difficult to control with medications, and may lead to esophageal tears or even stroke. She may suffer weight loss of 10% to 20%. She will require nutritional support, fluids and medications throughout the majority of the pregnancy. Mothers suffering from severe HG are unable to care for themselves and experience malnourishment and exhaustion. […]