Congenital Heart Defects

Parachutes

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Happy rainbow baby

My happy rainbow baby at 6 months. Why my “rainbow baby” owes his existence to legal abortion Grace O. About nine months after making my heartwrenching choice to end my 20-week pregnancy due to a combination Hypoplastic Left Heart Syndrome and Down syndrome, I conceived again. That was a tough decision, one I had to make all over again each month that I did not get pregnant. Getting pregnant again is not a decision I would have made if abortion had not been legal. After what we’d been though, it was terrifying to even consider trying again. I now understood only too well that poor […]

Thanatophoric Dysplasia

Just One

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By Jennifer The decision to end my pregnancy in 2006 came two days after my now twelve year old daughter, Hannah’s, sixth birthday. She was excited for the arrival of her baby sister, Emily. At our 20-week ultrasound, which was performed a week late so that my husband could come to the appointment, we received the devastating news that our baby had “serious skeletal issues consistent with dwarfism.” A week later, the diagnosis of Thanatophoric Dysplasia (which literally means “death-bearing”), was confirmed by the perinatologist. Thanatophoric Dysplasia has a survival rate of zero, due to an obstructed formation of the lungs. In our case, pre-eclampsia […]

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“God only gives us what we can handle” and Other Untruths

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By Tova Gold On Facebook today a friend posted a comment about how stressed she was. I read through the comments and came upon the obligatory “God only gives us what we can handle” platitude. I came very close to posting a reply but decided I wasn’t in the mood to educate one stranger about the stupidity of that concept at the expense of the general niceness on my friends wall so I decided to come here and vent about it instead … Read the rest of this article at Finding My Muchness, a blog by Tova Gold. Excerpt republished by permission. ©Tova Gold

Hydrocephalus

Life after the storm

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By Julie I was unlucky two times. In a row. I had to make a heartbreaking decision to end my son’s life at 21 weeks and terminate a much-wanted pregnancy because of the prognosis of a “best case scenario of the developmental quality of life of a two-month-old.” We were told it was a one in a million occurrence. Five months later, I found myself pregnant again. We were monitored closely: every other week at a perinatologist’s office. And then, week 17, they started to see the same abnormalities. Week 18, diagnosis confirmed. Week 19, second termination. At that point, I couldn’t imagine being happy again […]

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Cupid’s arrow

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Grace O. Few things irritate me more than people griping about how much they hate Valentine’s Day. “It’s just a Hallmark holiday,” they whine, “Why can’t people say I love you every day instead of waiting for Valentine’s Day? I hate chocolates. I never have a date. Roses are a waste of money. It’s stupid.” These petty complaints crop up every year. And I have to stuff my response, resist the temptation to stun the complainers out of their self-absorbed grousing about how tough it is for them to tolerate another Valentine’s Day. So I let them sulk about romance, or polish their tiresome hipster cred […]

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When We Create Meaning

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By Tova Gold About six weeks after the girls died, I thought I would die from my grief. The entire experience of pregnancy and loss felt like a bad dream that I’d imagined. It’s because I never met them. I had no concrete evidence they’d existed. I chose to be “put under” for the delivery, because I was scared, and when I woke up they were gone, no longer in my body. It wasn’t until after that I realized how much I yearned to know what they’d looked like. How I ached for the opportunity to hold my two daughters at the same time, looking […]

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Grief and its Relationship with Time

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By Marna Cathleen As the layers unfold in my story of loss and grief I am noticing how the pain calms down and something else begins to happen. Yet, in those awful moments I did not believe it would ever get better. How feelings come and go I am learning that a feeling, good or bad, often feels that it will last forever. The only difference between a good feeling experience and bad one is that when the great joy and bliss are happening I usually do not ask the question; “when is this dam bliss going to end?” In fact time stands still in […]

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This isn’t about Down syndrome

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By Grace O. Ending a Wanted Pregnancy isn’t about Down syndrome (trisomy 21). This needs to be said, because to hear just about anyone else in the media tell it, all prenatal tests are for diagnosing Down syndrome, and all terminations following poor prenatal diagnosis are because of Down syndrome. When and how did a single chromosomal disorder become the proverbial poster child for all prenatal diagnoses, all medical issues, all life-threatening disorders and all cognitive disorders? When I hear people fantasizing about how they would “never” end a pregnancy for poor prenatal diagnosis, invariably they bring up Down syndrome. They’ll trot out someone they know […]

Congenital Heart Defects

Even Better Than Before

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By Grace O. It was a full six weeks after making ending my wanted pregnancy before I had even a glimpse of feeling normal. My loss was in February, 2000 after learning that my baby had irreparable heart defects and Down syndrome. I had found the support website, but it took me until April to screw up my courage and share my story with strangers via the old Yahoo listserv, where our grief support group was at that time. That was when my healing actually began. The time before that was like being at the bottom of an ocean of grief. I carried a dishtowel with me to mop up the […]

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The Dreaded Baby Shower

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by Grace O. It’s almost inevitable after we’ve ended a wanted pregnancy. We will be invited to the dreaded baby shower. It’s comes with the territory. We’re of childbearing age, and so too are our sisters, sisters-in-law, cousins, friends, coworkers and neighbors. Somebody else will be pregnant, and we’ll be invited to her baby shower. Before we were forced to choose between two terrifying options, we may have found baby showers fun, or tolerable, and if not tolerable, we could at least look forward to ice cream punch and cupcakes. But after EWP, a baby shower invitation can feel like an invitation to emotional Armageddon. […]