I've never heard of ehler danlos, sorry. But the earliest time for a baby to be born is in the 23rd week. Even then it has less then 10% chance of survival.

Hi stephanie,
although i'm not pregnant now, but i'm thinking about getting pregnant. Just like you, I have eds.. I know i'm either type I (classical) or type ii mitis (less serious form).
I did a lot of research about pregnancy and eds online and found this site (which is quite comforting actually) I think this should calm your fear a bit... If you are not type iv the vascular type..You have nothing to worry about.
My husband and I are gonna start trying in august! Let us know how you're doing!
Ps. I completely understand how you feel, cuz I feel the same thing, even before i'm pregnant!

Http://www.Ncbi.Nlm.Nih.Gov/entrez/query.F cgi?Cmd=retrieve&db=pubmed&list_ui ds=11952457&dopt=abstract

god bless, janelle

Pregnancy and the ehlers-danlos syndrome: a retrospective study in a dutch population.


Lind j, wallenburg hc.


Department of obstetrics and gynecology, medisch centrum haaglanden, westeinde hospital, den haag, the netherlands.

background: the study was carried out to assess the course and outcome of pregnancies in women with the ehlers-danlos syndrome, with the aim of developing guidelines for assessment of risk and counseling, and for providing optimum medical and obstetric care. Methods: a retrospective study based on data collected from members of the dutch association of ehlers-danlos patients. Pregnancies and neonatal outcomes of the affected mothers were compared with those of the nonaffected mothers who delivered an infant with ehlers-danlos syndrome. Results: in a group of 46 women with ehlers-danlos syndrome, 128 pregnancies beyond 24 weeks gestation were evaluated and compared with 43 pregnancies of 33 nonaffected women. The main maternal complications consisted of pelvic pain and instability (26% vs. 7%). One bowel rupture was reported in a woman with ehlers-danlos syndrome type iv. Preterm delivery occurred in 21% of the affected mothers compared with 40% of the nonaffected women with an affected infant; the women with ehlers-danlos syndrome experienced postpartum hemorrhage (19% vs. 7%) and complicated perineal wounds (8% vs. 0%) more often than the unaffected women. The floppy infant syndrome was diagnosed in 13% of the affected infants and did not occur in the nonaffected neonates. Conclusion: pregnancy is generally well-tolerated in women with ehlers-danlos syndrome, with favorable maternal and neonatal outcomes. In ehlers-danlos syndrome type iv it may be associated with severe maternal complications. Preconceptional counseling concerning specific possible complications and a multidisciplinary approach are recommended.


Pmid: 11952457 [pubmed - indexed for medline]

Hi there,
i too have eds as well as my daughter and sister. I miscarried two times but did finally carry a daughter full term. I was on bed rest and it was an exhausting time in my life but it is possible to have a child with this condition. I believe I have hypermobile type eds but will be going to the national institute of health in march for further testing which will be used as part of a connective tissue research project.
I belong to several eds support groups. I had to stop working due to the pain and dislocations back in 2004. The pain consumes my life. If you want any information on eds please email me and I will be happy to help you. I have tons of information. Even my doctors have asked for research articles for other patients that have problems not similiar to mine.
Good luck with the pregnancy and good luck with your health. Just know that there is support out there for those of us that do not seem to be able to get help from doctors that do not know about this condition.

I just saw a few programs about eds. It's seems like a painful life to live, and i'm sorry that you have to go through it.

I hope your pregnancy goes full term and you have a healthy little baby!!

Sarah

Old post

Stephanie,
I have EDS (only diagnosed last year) and have 2 adult children. Both have EDS. My first baby was born at 40 weeks, second at 35 weeks (induced due to placental insufficiency). Had placental insufficiency in 1st pregnancy, too. Felt very ill all thru both pregnancies and hip joints kept trying to dislocate. Now I understand why.

Hope all goes well. Any questions, please ask.

i was looking it up and i found this, which was quite disturbing:


Classical types 1 and 2
Affects approximately 2 to 5 in 100,000 people. In addition to the joint and cardiac effects noted above for hypermobility, this variant is characterized by soft, highly elastic, velvety skin which may tear, bruise, or scar easily and/or be slow to heal, and which has a tendency to develop benign fatty growths as well as benign fibrous growths on pressure areas. Pregnancy can be life-threatening in this variant. It affects type-V collagen, as well as type I.


it says pregnancy can be life threatening... thats horrible... i feel very bad for this poster... i wonder hwo everything went!

I am so confused... I have heard that EDS is no problem when pregnant and also that 60% of pregnancys will end in miscarriage or still birth... what is the truth?
I have had 3 miscarriages at 16 weeks and one live birth at 37 weeks... My son has recently been diagnosed with EDS and this explains alot about my whole family.
I want to try and have another baby but now I'm scared that it will be a losing battle.
Does anyone have any advise for me?

I have one of the classic types of Ehlers. I have had 2 healthy children with normal pregnancies besides edema to my legs. I have never actually spoken with or met anyone with Ehlers and would be interested to know more and see if we have any symptoms in commom. ??

Stephanie,

I would like to know how your pregnancy went. I had my second child in 2005 also. She is unaffected and the pregnancy went full term.
I look forward to hearing from you!

I have Eds type III and the neurocardic kind too. I am also pregnant with my first baby. I am also concerned with the baby, hopeful that the baby will have no problems. Was wondering if anyone had any if information about eds type III and pregnancy.

Hi,

I do suffer with EDS and iam currently 27 weeks pergnant, I do find my self in a lot of pain but having been diagnosed with eds since i was 12 i think you get used to the pain. I have no information about what is going to happen later on in my pregnancy and neither has my doctors. I do have a specialist of which will be with me through the last stages and birth of my child. I have read up that most women with eds cant carry there children full term and there can be very bad complications during and after the birth...

I have EDS as well. I have the vascular type (formerly type IV). It was actually diagnosed during my first pregnancy when it became apparent that I had heart problems. Turns out I have mitral valve weakening and regurgitation. It is mild and does not need to be treated by anything other than Procardia. I have the hypermobility of my joints and my skin does have a bit of the flexibility but my main symptoms are the joints, bruising and my heart. They put that all together with the positive skin biopsy, Beighton score and the DNA test and it turned out I have EDS-V You are absolutely correct Donna about most women not being able to carry to full term. Along with a retroverted uterus, the EDS had a role in my preterm labors. Ultimatly each child you have will have a 50% chance of developing some type of EDS. Those with vascular EDS are at higher risk of having children with EDS than those with the less extreme forms of EDS. My daughter is in physical therapy to help her learn to stabilize her joints. Both my kids wear protective knee/elbow pads to prevent the cigarette paper scars and both have extremely sensitive skin. My daughter has been diagnosed with EDS classic II and my son has the lesser form of EDS classic I. Pregnancy is not life-threatening unless you have a severe vascular/neuro/internal form of EDS. That information was incorrect. It seems that miscarriage and preterm labor are the most common forms of complications for most EDS patients. The complications after birth are uterine prolapse, bladder prolapse, hip dislocations (maternal), shoulder dislocations (neonate), elbow dislocations (neonate), severe bruising (both maternal and neonatal), tearing, and sometimes excessive bleeding if you have the vascular type.

I am in my 39th week of pregnancy with my third child and both my sister and I have this disease, I suffuer from chronic pain and joint dislocation but have otherwise had few problems. My sister has suffered sevral miscarriges and many broken bones as a result of her EDS. She is also very over weight and I have been told by many doctors that it is very important to not gain too much weight as it compromises already unstable joints. I hope this helps.

I am new to this forum.my sister has eds & i do not know which type it is.she is 26yr old & wants to get pregnant.can someone pl guide me with info about how to know the type & pregnancy related issues.
my sister is in India.i would really appreciate if anyone can help me out with this.
her skin is thin & mild laxity & joint hypermobility.dermatologist said its probably eds.typing or conformation was not done so far.other than this she does not any other health problem.she wants to plan her first pregnancy.can anyone pl help regarding the diagnosis,typing & pregnancy and inheritance to her child.thank you once again.

I am new to this forum.my sister has eds & i do not know which type it is.she is 26yr old & wants to get pregnant.can someone pl guide me with info about how to know the type & pregnancy related issues.
my sister is in India.i would really appreciate if anyone can help me out with this.
her skin is thin & mild laxity & joint hypermobility.dermatologist said its probably eds.typing or conformation was not done so far.other than this she does not any other health problem.she wants to plan her first pregnancy.can anyone pl help regarding the diagnosis,typing & pregnancy and inheritance to her child.thank you once again.

Veena_80, read my above post, it will answer most of your questions.

I am 23 yrs old and have a 2 year old son and have EDS III. Pregnancy with EDS is not life-threatening. My mother has EDSIII and had 4 children. My pregnancy was extremely painful, but not life threatening. I had ruptured blood vessels as a result of my EDS and blead for 8 weeks. While it was scary, it was not life threatening.

EDS get worse after pregnancy because toward the end of your pregnancy your body releases a hormonoe called "relaxin" and after you have your baby your body is supposed to go back to normal, but that relaxin does permanent damage to EDS patients. Your joints loosen up and your hips spread to allow the baby to pass through the birth canal and then go back to normal. But with EDS you just don't go back to normal and your hip joints stay loose. It does get worse with each pregnancy, but it doesn't threaten life.

It is extremely painful, but even more than that it is extremely WORTH IT!

I visited with my specialist recently and she told me EDS patients should give birth early before the relaxin takes affect to avoid the damage. I had my son at 38 wks and they are recommending 37 for my next one.

Good luck to all and remember it's hard, but worth it!