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

Tuesday, February 1, 2011

EDS Babies III

This is sort of a multi-part entry called "EDS Babies."  "EDS Babies?" is located here and "EDS Babies II" is located here.  When I talk about the EDS Babies series of entries I am referring to my future pregnancy and the possibility of our future children having EDS.

So, once I get that out of the way I want to share a picture I made the other day.  I spent a long time on it and call it "Babies on the Brain."

"Babies on the Brain"
I also made a drawing of our bedroom and how we would change it to accommodate a much wanted addition to our family.  I know that first we have to get my health under control before we start trying to get pregnant.  We also have to get our finances under control.  After that...who knows.  I hope to be a Mommy in the next couple of years.  I don't know what I'd do otherwise.  I will talk to Dr. W., the geneticist who specializes in Connective Tissue Diseases, in St. Louis about having children.  My rescheduled (yes, again) appointment is in March.  I've had quite a few EDSers tell me that their geneticist told them not to have children, but I think that those are mostly people with vascular type.  A few who told me that had a bad case of classical type.  I have hypermobility type and do not expect my diagnosis to be changed when I see the geneticist.  I have quite a few friends who have H-EDS or C-EDS (and even some with V-EDS) who have had children and are just fine.

I've been reading a lot about relaxin.  From what I understand it is a hormone that is released in a woman's body during labor to help facilitate birth.  Some of my research has shown that once relaxin is released is an EDSers body the woman's body never "goes back" the way it was before, thus dislocations happen easier and more often.  Some women chose to undergo induced labor a week or so earlier than their due date to try to prevent this.  I know that it is recommended to not have a Cesarean section for an EDS mom.  I know that there are also extra risks if the child has EDS.

This got me thinking about my birth.  My mom nearly hemorrhaged with a bad bleeding problem.  Oh, let me clarify, I'm the first EDSer in my family.  That makes me even more rare!

I believe I've mentioned before that I have PCOS, which is the leading cause of female infertility.  PCOS is also responsible for an increased risk of miscarriage.  Usually I don't ovulate due to the PCOS.  Well, guess what?  I've ovulated two (maybe three) months in a row!  I'm ecstatic.  I'm going around with a goofy grin on my face and listening to my favorite music.  I want to be a Mommy so bad.  I know my DH will make an awesome, awesome Daddy.  We've been talking a lot about raising children, such as disciplining them, teaching them safety rules, and of course, loving them.  

The book What to Expect Before You're Expecting by Heidi Murkoff and Sharon Mazel has become available on now.  I'm excited to be getting the book.  

I really have a good feeling about our having a baby.  We have stuff to do first (get my health under control, get finances under control, go off my medications) but I feel like I'm at least a bit closer to the day I'll enter into Mommyhood.  

1 comment:

  1. I thought I would share my pregnancy experience with you. My diagnosis is for EDS 3 Hypermobility type, and although pregnancy issues are less common in this type, they are not unheard of, and I was one of the exceptions.

    I was pregnant with twins, and miscarried one of them at about 2.5 months. During the rest of my pregnancy I developed gestational diabetes, although I doubt that has any relation to EDS. About 3 weeks before my due date, I took a tumble in the middle of the night (typical EDS clumsiness) and ended up tearing my uterus and causing some fetal distress and a premature labor. Luckily my son was already a whopping 8 lbs 11 oz (they say he would have been an 11 pounder if I carried him full term!) and was hearty enough for the early delivery, although he was jaundiced at birth and had to be kept in the hospital for a few days.

    In addition to the problems with my pregnancy and delivery, my son has suffered health problems and I cannot help but wonder if EDS played a part. First of all, he has a high-functioning form of autism called Aspergers Syndrome. I have seen several sources discuss a link between autism and EDS. Second, he was diagnosed with Acute Lymphocytic Leukemia at age 2 (in long remission now at age 17). I've only found one document linking EDS to Leukemia (, but it is definitely still worth mentioning. And lastly, my son DOES show signs of EDS, so it appears I have passed the gene on to him.

    I know this all sounds very negative... I isn't my intent to discourage you from having kids, because you sound like you would be a great mom! But I do want to caution you not to take your diagnosis of Hypermobility type lightly, both in terms of pregnancy complications and the genetics you might pass on to your child.


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