Sister In Hospital

[Maxine]

Dr. Clair Francomano is right in Baltimore. She's one of the top in the country on EDS, and some day I'll probably go to see her. However, I do have a great EDS doc right now, and still have two visits to NIH to complete the EDS study Dr. McDonnell is doing.

You don't have to be very hypermobile to have EDS, and there are different types that don't have hypermobility or very little. It might be worth checking out.

http://www.gbmc.org/genetics/harveygenetic.../francomano.cfm

My niece is doing OK, she landed a job with a great state community college, and she now has great benefits so they can try again to get pregnant. She gets any further education paid for also. Unfortunately my brother that is in stage 4 cancer is her Dad also. Things have been rough for all of them, but they are all plugging along and hanging on the eachother.

I really feel for your sister, and I know by watching my niece that this is a very difficult thing to wrap your head around, and how something so tragic can happen.

Still praying for all of you to have strength and healing.

Take Care,

Maxine

[all4family]

Hi Katherine,

I just want to say I am so sorry about your sisters loss. It is so tragic that it happened and I can understand wanting to understand why it happened. Your sister and your family will be in my prayers.

I had pre-eclampsia with my first pregnancy, but no abruption. I was on bed rest for 3 months. I had a early mis-carriage for my second pregnancy. I think it is a good idea doing some type of research into this, but at the time of grief you and your family are going through may not be a good time as you all need time to heal.

Again you are all in my thoughts and prayers,

caring hugs,

Suzy

[morgan617]

Oh Katherine, I am so sorry about this! I was going to write that at 33 weeks, babies tend to do very well, only to read the next post. Abruptions are very dangerous and so emergent, they hardly ever go well. My prayers are with you, your sister and your whole family. I was an abruption 54 years ago and can't believe my mother and I both survived.

I hope your sister improves quickly. so sorry, morgan

[goldicedance]

Katherine,

Like others here, I cannot truly express my sorrow and shock for what your sister (and her family) have been through. Words are difficult because fortunately I have never walked in her shoes. I might add, however, that my mother and my cousin each had stillborn babies in the last two weeks of their pregnancy. I was quite worried when I was pregnant about whether there was some type of familial predisposition to this tragedy.

Your sister faces the daunting tasks of recovering both physically and emotionally. Neither are easy.

I will keep her in my thoughts.

The emotional recovery must be so difficult. When I was pregnant, my mother was adamant that I should not have a baby shower, prepare the baby's room, etc. She must have had in back of her mind how much difficult the whole situation would be if the mother had to come home to an empty crib, etc. Perhaps it was also atradition kept by our Jewish families....stores used to hold baby layettes, cribs, etc. for delivery when the baby comes home.

Please relay to your sister my thoughts for her recovery.

Lois

Is there any connection between placenta abruption and collagen dysfunction (as in EDS)? Would be interesting to know.

[EarthMother]

Dear Katherine,

I just now caught this thread and read the very tragic news. My heart goes out to you and your family. I hope your sister is improving. She has a difficult time ahead of her and will no doubt, like you, be searching for answers, looking for contributing factors, and seeking reassurance from all those she loves and trusts.

I wish this life experience had more road maps and we were able to better navigate our journey. But it seems especially in times like this that things happen without reason and is perhaps when each of us finds faith in something outside of our own ability.

My thoughts are with you.

[corina]

dear erikapt and katherine,

i am so very very sorry and lost for words. i have been writing and deleting and writing and deleting again, just to find out that there is nothing more i can offer you than my deepest sympathy. you and your families are in my thoughts,

corina

[MomtoGiuliana]

Everyone--thank you so very much for your words. I know it is hard to know what to say. To say anything at all acknowledging the pain is a comfort. I know many of you have experienced unknowns, fears and tragedy as well. Knowing you have survived helps me to know that we can too.

I don't plan immediate action, but I do plan to pursue testing again for EDS at some point. I am glad to know there is such an excellent specialist nearby in Baltimore.

I talked to my sister finally. She is a most resilient person; I am proud to have such a strong sister. She is doing well with her physical recovery. She is done with the blood transfusions. At this point, she could have one more unit, if she chooses. She knows she has a long road ahead, but she said to me tonight, through her tears, that this is not the end, but part of her life story. It sounds like the hospital has been wonderfully supportive. I wish I could be there to hug and hold her, but I know she will need me later too, when she is less surrounded by other loved ones.

My personal pain is lessened, knowing that she has confidence that she can find peace. I realize what I am going through, partly, is survivor's guilt. That's why it is such a relief to me to connect with her. I feel like I have permission to work through my grief.

She is supposed to meet with a high risk ob-gyn today. They will talk about what happened and what approach to use for a future pregnancy.

[dizzygirl]

my prayers are with you and your sisters family.. I'm so sorry to read of her loss.. and the troubles she has/is going thru..

god bless

linda

[jjb]

Thanks Maxine. Neither my sister or I have ever had problems with joints or dislocations. Although we both experienced TMJ after wearing braces on our teeth--which never became chronic or serious. It cleared up for both of us within years. However, I do wonder. I don't know the best way to go about getting tested.

I remember your letting us know about your niece's loss. It's horrible that anyone has to go through this. I hope she is managing the grief ok.

I never thought I had a problem w/ dislocations except TMJ ... I thought I was just "flexible". It was not until I saw Dr Nazli that I realized I had probably had several dislocations and subluxations. She said my shoulders are in a subluxed position all of the time. Dislocations are not so obvious when you are so hypermobile. When my joints slip out of place, I can get them back in place on my own.

I would definitely explore the possibility of EDS before getting preg again. We have had several family members w/ late term losses. Francamano is one of the best to see.

[MomtoGiuliana]

I never thought I had a problem w/ dislocations except TMJ ... I thought I was just "flexible".

Interesting. Although I am definitely not flexible.

jjb and Linda thanks for your thoughts. My sister is taking it one day at a time. She has great support from friends. I'll be spending some time with her soon.

I can't find any literature connecting EDS and placental abruption (not really a surprise). But, I look forward to being able to be evaluated by an expert.

[jjb]

I never thought I had a problem w/ dislocations except TMJ ... I thought I was just "flexible".

Interesting. Although I am definitely not flexible.

jjb and Linda thanks for your thoughts. My sister is taking it one day at a time. She has great support from friends. I'll be spending some time with her soon.

I can't find any literature connecting EDS and placental abruption (not really a surprise). But, I look forward to being able to be evaluated by an expert.

I will try and find you links later, but there is data on abruption and EDS.

I think w/ classic type EDS there is up to a 50% chance of abruption or related issue.

[jjb]

From the EDNF site:

Pregnancy in the Classical type of EDS bears risk for the newborn as well as for the woman. Premature rupture of the membranes (if the fetus is affected) and prematurity are common. In the severe (gravis) form of classical EDS, prematurity occurs in approximately 50% of the cases, whereas in the mild (mitis) form, prematurity does not occur more frequently than normal. Breech presentation is more frequent if the baby is affected, due to hypotonia, and may lead to dislocation of the hips or shoulder of the newborn. In the affected woman, extension of episiotomy incisions, tearing of the perineal skin by forceps, and prolapse of the uterus and/or bladder may occur after delivery. As a whole, these complications are more frequent than in the normal population; however, it is difficult to quantitate the incidence of each individual complication in affected individuals, since no good studies exist.

[Guest tearose]

Katherine,

I had missed this thread. I am so very sorry to hear of this tragedy. I pray for your sister, you and your families. I cannot imagine how deeply sad this time is. May you find some comfort in knowing you are surrounded by those who care.

sincerely,

tearose

[lalalisa]

Katherine,

I also just saw this thread and wanted to say that i'm so sorry to hear of your sister's loss. I can't imagine what you are all going through right now and will pray for you tonight.

Thanks for sharing so we can be here for you...

Love,

Lisa

[MomtoGiuliana]

Thanks Tearose and Lisa. It really does help to know that other people care and understand.

jjb thanks for the reference. I'm now more doubtful again about EDS, but there's a great geneticist nearby and I will be more comfortable with it ruled out.