for one and all > umbilical cord knot
Oh no. Sweet heart, I am so, so very sorry for your loss. And it is so very fresh, and /*
7facing these decisions is difficult because you are in shock.
I don't know whether or not you are seeking advice. I can only tell you that we chose not to have an autopsy done; at the time, neither of us could bear the thought of his perfect little body that had been alive just hours before being cut up, prodded, sectioned, examined. I don't think it was the wrong decision in hindsight - in fact, that was our gut reaction, and I
think those are rarely wrong.
I do, however, wish that we had considered it more. We knew the cause of death - premature birth. What caused that seemed most likely to be a problem with me, so we didn't pursue it. Now that I'm in the process of undergoing what feels like a million tests because of all the possible things that could have happened, I sometimes catch myself and wonder if we ought to have pursued it, just to know for certain. He seemed so perfect all along, but that doesn't necessarily mean he was.
Regardless - you do what feels right and best for you as a family right now. You will make the best decision you can and that is all you can ask of yourselves.
I am so sorry for your loss and for what you'll be going through in the next few days, weeks, months. There are a lot of us here, and we will be here to sit with you, and mourn with you.
7facing these decisions is difficult because you are in shock.
I don't know whether or not you are seeking advice. I can only tell you that we chose not to have an autopsy done; at the time, neither of us could bear the thought of his perfect little body that had been alive just hours before being cut up, prodded, sectioned, examined. I don't think it was the wrong decision in hindsight - in fact, that was our gut reaction, and I
think those are rarely wrong.
I do, however, wish that we had considered it more. We knew the cause of death - premature birth. What caused that seemed most likely to be a problem with me, so we didn't pursue it. Now that I'm in the process of undergoing what feels like a million tests because of all the possible things that could have happened, I sometimes catch myself and wonder if we ought to have pursued it, just to know for certain. He seemed so perfect all along, but that doesn't necessarily mean he was.
Regardless - you do what feels right and best for you as a family right now. You will make the best decision you can and that is all you can ask of yourselves.
I am so sorry for your loss and for what you'll be going through in the next few days, weeks, months. There are a lot of us here, and we will be here to sit with you, and mourn with you.
November 27, 2009 |
eliza
eliza
Thank you, Eliza. I was seeking advice but after I posted this one of the nurses told me I'd actually already signed the form to authorize the autopsy. I completely forgot. I still don't like the idea but feel like I should rule everything else out before settling on the cord knot theory. At least then I'll know what to worry about if there's a next time. I honestly don't see myself wanting to ever go through another pregnancy now that I know how truly fragile they are and little we really can know, medically and technically. It's scary how confident I was that each doctor's visit was assurance that all was well when they really checked so little. Now I understand what everyone meant by saying there was no way anyone could've known on Monday what would transpire by Wednesday.
Another question I had for other people in this situation is burial arrangements and services. I personally do not want a funeral service. I want to visit the gravesite with my husband and daughter and grieve alone. My family, however, seems very unsettled that I'm not planning on having a funeral. I realize this is their way of grieving and I never planned to deny them of that. I'm okay with offering a time for us all to get together but I'm not calling a priest. I'm no longer Catholic - they are. My in-laws are Baptist. Do I suggest they each call their own priest/pastor or do I simply invite everyone at a specific time and allow whoever wants to speak the chance? I want to be respectful of everyone's needs but I don't want them to override mine and my husbands.
Thank you for offering this forum for my questions. I've been coming here a lot the past few days and it has helped knowing that other people have indeed made it through similar tragedies in their lives. This is by far the worst thing I could ever imagine having to overcome.
Another question I had for other people in this situation is burial arrangements and services. I personally do not want a funeral service. I want to visit the gravesite with my husband and daughter and grieve alone. My family, however, seems very unsettled that I'm not planning on having a funeral. I realize this is their way of grieving and I never planned to deny them of that. I'm okay with offering a time for us all to get together but I'm not calling a priest. I'm no longer Catholic - they are. My in-laws are Baptist. Do I suggest they each call their own priest/pastor or do I simply invite everyone at a specific time and allow whoever wants to speak the chance? I want to be respectful of everyone's needs but I don't want them to override mine and my husbands.
Thank you for offering this forum for my questions. I've been coming here a lot the past few days and it has helped knowing that other people have indeed made it through similar tragedies in their lives. This is by far the worst thing I could ever imagine having to overcome.
November 28, 2009 |
caholmes
caholmes
We did not have a funeral, but our situation was also a little different. Gabriel was born at 21 weeks and we lived three hours away. He wasn't really real to a lot of our family, as they had not even seen me since early pregnancy and hadn't heard his heartbeat or seen more than a couple of blurry ultrasound photos. My in-laws haven't seen Gabriel's pictures at all; I'm not sure whether they know if they exist or not.
So, to us, it didn't seem necessary to have a memorial service or funeral. He was gone and we were the only ones who knew him. The families all asked, but it was simply more trouble than it was worth to us to coordinate that and have everyone drive out for just a few hours. So we didn't.
We also chose to have Gabriel's remains cremated, so that we could have them with us and because we were pretty traumatized by the idea of putting him in a box. We were a little sad about not having a gravesite to visit, but we have since found out that we can have his ashes buried if we so choose.
I would say that having a gathering for everyone would be lovely. There is no sense in a funeral mass if it doesn't mean anything to you, and since your families are of different religious practices. A general gathering for people to mourn together and speak would probably be very healing for you all, without overtaxing you and your husband's limits.
Don't worry too much right now about having other kids. It's good to keep options open. I can remember looking at my husband with Gabriel in my arms and saying "Never again. Never never never. I will never do this again. I will die." And now, we are getting ready to try again as soon as the testing is complete. If you decide, with some distance, not again - that is 100% ok and the right decision for you. For us, Gabriel was our first born and so we feel almost compelled to try again.
The fragility of life is never more apparent and never harder to bear than in this loss. It will get better someday. For now, you just have to breathe in and breathe out.
So, to us, it didn't seem necessary to have a memorial service or funeral. He was gone and we were the only ones who knew him. The families all asked, but it was simply more trouble than it was worth to us to coordinate that and have everyone drive out for just a few hours. So we didn't.
We also chose to have Gabriel's remains cremated, so that we could have them with us and because we were pretty traumatized by the idea of putting him in a box. We were a little sad about not having a gravesite to visit, but we have since found out that we can have his ashes buried if we so choose.
I would say that having a gathering for everyone would be lovely. There is no sense in a funeral mass if it doesn't mean anything to you, and since your families are of different religious practices. A general gathering for people to mourn together and speak would probably be very healing for you all, without overtaxing you and your husband's limits.
Don't worry too much right now about having other kids. It's good to keep options open. I can remember looking at my husband with Gabriel in my arms and saying "Never again. Never never never. I will never do this again. I will die." And now, we are getting ready to try again as soon as the testing is complete. If you decide, with some distance, not again - that is 100% ok and the right decision for you. For us, Gabriel was our first born and so we feel almost compelled to try again.
The fragility of life is never more apparent and never harder to bear than in this loss. It will get better someday. For now, you just have to breathe in and breathe out.
November 29, 2009 |
eliza
eliza
caholmes, I'm so sorry for what you've been through, but I'm glad you've found a place here.
I don't have the time I wish I did to answer properly, so I'll be brief: I know your family is grieving too. Don't worry about that for now. Do what feels right in terms of burial and services. You are your baby's mother. The only people this decision rests with is you and your daughter's father. Your family will get over it... and I think your idea of having a gathering, like a memorial or just a chance to do something in her memory together - that's wonderful.
My husband and I went alone, in our canoe, to scatter our son's ashes in a beautiful everglade. I never considered the idea of a formal service. It didn't feel right to us, and I wanted to be alone too.. so I understand.
All you need to do is this one thing. Be very calmly straightforward with your family. I'd suggest, at the risk of making presumptions, that they'll respond sensibly to that. Just tell them that you understand what they're accustomed to, but that his is your journey primarily, and that you are her parents, and that you're following your heart and doing what you need to heal. Tell them you love them, and appreciate their investment in this child. Plan to plant a tree together, or some other sort of public ritual that will help to give them a moment of togetherness in her name.
Thinking of you.
I don't have the time I wish I did to answer properly, so I'll be brief: I know your family is grieving too. Don't worry about that for now. Do what feels right in terms of burial and services. You are your baby's mother. The only people this decision rests with is you and your daughter's father. Your family will get over it... and I think your idea of having a gathering, like a memorial or just a chance to do something in her memory together - that's wonderful.
My husband and I went alone, in our canoe, to scatter our son's ashes in a beautiful everglade. I never considered the idea of a formal service. It didn't feel right to us, and I wanted to be alone too.. so I understand.
All you need to do is this one thing. Be very calmly straightforward with your family. I'd suggest, at the risk of making presumptions, that they'll respond sensibly to that. Just tell them that you understand what they're accustomed to, but that his is your journey primarily, and that you are her parents, and that you're following your heart and doing what you need to heal. Tell them you love them, and appreciate their investment in this child. Plan to plant a tree together, or some other sort of public ritual that will help to give them a moment of togetherness in her name.
Thinking of you.
November 30, 2009 |
sweetsalty kate
sweetsalty kate
I am so very sorry, caholmes. This is a terrible place you find yourself in.
I just wanted to try to reassure you a little about the autopsy. I know it's so very hard to think about what needs to happen to her little beautiful body. But there is also the possibility of finding something important in the process.
My son died at 34.5 weeks, sometime during the day after I had a very normal appointment in the morning, heartbeat and all. After he was born, it was apparent that he had two true knots on his cord. Doctors on the floor at the time thought it was a very clear reason for his death, and asked us whether we still wanted the autopsy. I waffled because, you know, he was so very beautiful. I told them to call my doctor to ask what he thought. He said he would like us to go ahead with the autopsy because he was concerned that there might be an infection in addition to the knots.
Long story short, his hunch was right. There was an infection (GBS, and I actually wrote about this here on Glow in the summer of '08) in the intact sac, and the pathologist ruled it contributory cause of death. It was likely literally life saving information for my younger son, born slightly more than 18 months after his brother. Whether you think now that you would want to get on this crazy ride again or not, you might change your mind later. Having all the information is likely to help with that decision.
As for the funeral arrangements, I don't know if it's still relevant, but we had a short burial for just the family. (If I had a way to exclude my MIL, I would've-- she was horrid in a lot of ways, including at the funeral.) Our friends wanted to come to the funeral, but we said no. They also offered to arrange food for after, whether or not we'd let them come over. We didn't know what we wanted until the day before. We finally decided on letting our friends come to our house a little later in the afternoon. That ended up being good. So maybe you could have the burial just with the three of you and then let family meet you at the house later?
I am so very sorry. These are hard days. Please please please try to be gentle with yourself as you make your way through them.
I just wanted to try to reassure you a little about the autopsy. I know it's so very hard to think about what needs to happen to her little beautiful body. But there is also the possibility of finding something important in the process.
My son died at 34.5 weeks, sometime during the day after I had a very normal appointment in the morning, heartbeat and all. After he was born, it was apparent that he had two true knots on his cord. Doctors on the floor at the time thought it was a very clear reason for his death, and asked us whether we still wanted the autopsy. I waffled because, you know, he was so very beautiful. I told them to call my doctor to ask what he thought. He said he would like us to go ahead with the autopsy because he was concerned that there might be an infection in addition to the knots.
Long story short, his hunch was right. There was an infection (GBS, and I actually wrote about this here on Glow in the summer of '08) in the intact sac, and the pathologist ruled it contributory cause of death. It was likely literally life saving information for my younger son, born slightly more than 18 months after his brother. Whether you think now that you would want to get on this crazy ride again or not, you might change your mind later. Having all the information is likely to help with that decision.
As for the funeral arrangements, I don't know if it's still relevant, but we had a short burial for just the family. (If I had a way to exclude my MIL, I would've-- she was horrid in a lot of ways, including at the funeral.) Our friends wanted to come to the funeral, but we said no. They also offered to arrange food for after, whether or not we'd let them come over. We didn't know what we wanted until the day before. We finally decided on letting our friends come to our house a little later in the afternoon. That ended up being good. So maybe you could have the burial just with the three of you and then let family meet you at the house later?
I am so very sorry. These are hard days. Please please please try to be gentle with yourself as you make your way through them.
December 2, 2009 |
julia
julia
Thank you all so much for your insight. We decided today to have her body cremated and there will be a Memorial service for her at the funeral home. We'll scatter her ashes somewhere meaningful as a family. I think it's important that Lily (our 3 yo) is part of the process when we decide where to go. The autopsy has been done and now I'm just waiting for results.
Julia - I appreciate your confirmation that this was the right decision. I didn't want to make any of these decisions, but I do think it's important to know what we're up against if we decide to do this again. It gives me great hope to hear that you had such a similar story and have now had a healthy baby boy. Thank you.
Kate - You made me think more about the cremation that helped me make that decision. Again, as painful as it is, I'm grateful to have found this support network. I actually discovered your website years ago and found myself crying miserably at what happened to your son and not being able to imagine dealing with such pain myself. I didn't come to GITW very often, since it wasn't for me...yet. I find that so eerily ironic that I can't help but push the thought out of my mind that I had some sort of premonition that I would need to know where to find you here again someday. How could I have known and of all the websites I've browsed over the years, why did this one leave such an impression that I knew exactly where to find you when I needed you?
Eliza - I remind myself every day of your advice to just breath in and out. That's all I can do and it really does help me make it through the day, and night.
Julia - I appreciate your confirmation that this was the right decision. I didn't want to make any of these decisions, but I do think it's important to know what we're up against if we decide to do this again. It gives me great hope to hear that you had such a similar story and have now had a healthy baby boy. Thank you.
Kate - You made me think more about the cremation that helped me make that decision. Again, as painful as it is, I'm grateful to have found this support network. I actually discovered your website years ago and found myself crying miserably at what happened to your son and not being able to imagine dealing with such pain myself. I didn't come to GITW very often, since it wasn't for me...yet. I find that so eerily ironic that I can't help but push the thought out of my mind that I had some sort of premonition that I would need to know where to find you here again someday. How could I have known and of all the websites I've browsed over the years, why did this one leave such an impression that I knew exactly where to find you when I needed you?
Eliza - I remind myself every day of your advice to just breath in and out. That's all I can do and it really does help me make it through the day, and night.
December 2, 2009 |
caholmes
caholmes
Now I'm here, recovering from a c-section with no baby. My sweet 3 year old daughter without the baby sister she's been so eagerly awaiting.
They think the cause of her death was a knot in the umbilical cord only 3 cm from the placenta, however they can't be certain. A number of blood tests are being done on me but they also want to know if I'd like an autopsy done on her. My husband and I are hesitant to further damage her little body but don't want to miss out on the information that could be gathered. We have no idea if we'll try to have another child, too, and that seems to be the primary reason to find out exactly what happened.
I'm still at the stage where nothing is going to bring her back so why bother pursuing the cause to such lengths? I just want this to be over.