Amy's Journey with...

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Headaches

Sunday, January 3, 2010

EDS babies?

Babies.  They are everywhere.  I turn on the TV and there are pregnant mommies, babies, newborns, toddlers.  I walk into the store and find myself in the aisle along with the baby powder and Pampers and all things baby.  I lay next to My Love at night with my hand resting on my empty womb, dreaming of the time I will be filled with the child My Love and I will make.

So...I am baby obsessed.  I only recently received the diagnosis of Ehlers-Danlos Syndrome, Hypermobility type.  I'll cover more what EDS is in another blog post soon.

I keep having these dreams of being pregnant and finding out my baby has severe EDS.  I know that there are risks to me if get pregnant because of having EDS and I know that my child will have a 50% chance of getting EDS from my genes.  I've been tweeting about it (of course!) and here are some I took screen shots from for this blog post.

I know I should weigh the risks, but really the only thing I know about EDS is that I have it.  The rheumatologist made a preliminary diagnosis, with the geneticist making the final EDS diagnosis.  Before I even received the EDS diagnosis my gynecologist told me that I'd have a high risk pregnancy and he wouldn't be able to handle it, rather I'd need to see a doctor dealing in high risk pregnancies.  Scary.  That is really scary.  Add that to the fact that my Hashiomoto's hypothyroid, my epilepsy, and my Polycystic Ovarian Syndrome (PCOS) can all cause infertility...well let's just say it scares me.  They also say that fibromyalgia (FMS) may be partially genetic.  Would I be a bad mother just by giving birth because I'd be putting my baby at risk for a life of ill health and pain?

Someone recently told me that everyone who has a baby takes a gamble on whether they will be having a healthy baby or not.  What if the gamble was more like Russian Roulette?  Would that be what it would be if I gave birth?  Right now I don't think too much of the complications that may affect me.  To borrow a phrase my mother used to say, but in all honesty, don't I need to take that into consideration as well?  We have a friend who stayed on her seizure medicine while she was pregnant and her son was born with severe birth defects.  He's four now and wasn't expected to live that long.  If I went off all of my medicine, how many seizures would I have?   Would only the tonic clonic seizures hurt the baby?  Or would the simple and partial seizures hurt him, too, because my body is stressed?

Of course, we also come back to the beginning of the topic on babies...EDS.  I've read of complications from EDS and I've read of women who had few complications.  For instance, in this survey online 47% of the respondents had EDS related pregnancy complications.

For now I have to wait.  I need to graduate with my Masters first before I can even think about actually having babies. I have doubts about ever being about to work, especially as many of my multiple conditions can worsen with age or cause other conditions that worsen with age.  For now I am baby free, and will stay longing for our own child.  I don't know how things will or won't work out.  I can only hope that someday My Love and I will have our own children, that they will be healthy, and that we will be the best parents we possibly can be.


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