After having some time to reflect on the stories that were shared at the conference we went to a few weeks back, I have been struck by what a difference having time to prepare and adjust made in our experience, and what a gift that time was to us.
Don't get me wrong, receiving a diagnosis at 20 weeks and continuing the pregnancy is difficult. You have all the discomforts of a pregnancy, and later labor and delivery, with the knowledge that the reward for your pain will be fleeting and followed by intense suffering. You live in uncertainty about your health and the continuing health of your baby. Every aspect of your pregnancy that you might unabashedly celebrate in other circumstances, like kicks and turns, become bittersweet when you know those little signs of life will soon cease. Small things like going to the doctor's office, seeing healthy pregnant women or newborn babies, having to buy maternity clothes, or being questioned about your pregnancy become huge emotional chores. However, after seeing the fallout from a sudden and unexpected loss, I am really thankful that we had warning.
We had plenty of time to create a birth plan for Leah. This process was very empowering, as it gave us the opportunity to communicate our choices for how we would spend our time with Leah, and it facilitated our planning of that time. We had time to adjust to the idea of seeing our baby with anomalies, and learned of the benefits of holding her and spending time with her. We had the opportunity to arrange for a photographer, pick out an outfit, make blankets, and begin to think about her burial. Most importantly, we were able to have some family members come out for her birth, and stay at the hospital to support us and to advocate for our wishes.
Because we were prepared, our experience was incredible. We were able to focus on our Leah, and make memories with her.
Parents who are blindsided by infant loss usually don't have this experience. Grief and shock prevent them from advocating for themselves. They may not be able to make the decision to hold or see their baby, and since not all doctors will advocate strongly for this (despite the proven benefits of doing so) they can end up with deep regrets. Similarly they might turn down photographs, or only have a few snapshots taken by the hospital. Worst of all, without someone there to guard their interests, precious mementos may not be collected, might be lost, or worse, might be thrown out. After listening to some horrible, heart-wrenching stories about things that happened to some of these families, I am convinced that all parents who suffer a sudden perinatal loss need time and an advocate to assist them in navigating their decisions, and to gently push them to reconsider choices, such as not wanting to see or hold their baby, that statistics show parents overwhelmingly regret.
When we received Leah's diagnosis at our 20 week ultrasound, the doctor immediately offered us our choices, but never advised us to take time to think or to consult with a social worker or counselor. His best plan was to have "our problem" (known to us as Leah) "taken care of" the next day. It shocked us that he pushed us to terminate Leah, to quickly resolve our medical situation, without even giving us even a few minutes to talk it over. My health was not at risk, we had four full weeks to obtain a traditional abortion under Illinois law (after 24 weeks they send you to Kansas), and because Leah's diagnosis had a 100% fatality rate, we would be allowed to deliver her early at any time. At that early stage of gestation Leah had very little chance of surviving labor. Yet he still wanted us to act the next day.
The insistence on immediate action (when none was medically required) that we encountered in our experience, and observed in the experience of those with unexpected stillbirths, seems at odds with the goal of providing optimal mental, emotional, and physical care. It treats the body at the expense of the mind and spirit. It allows no time for your heart and head to process the experience. Our bodies are more than bags of organs, muscles, bones and blood. We should receive treatment with this taken into account.
Don't get me wrong, receiving a diagnosis at 20 weeks and continuing the pregnancy is difficult. You have all the discomforts of a pregnancy, and later labor and delivery, with the knowledge that the reward for your pain will be fleeting and followed by intense suffering. You live in uncertainty about your health and the continuing health of your baby. Every aspect of your pregnancy that you might unabashedly celebrate in other circumstances, like kicks and turns, become bittersweet when you know those little signs of life will soon cease. Small things like going to the doctor's office, seeing healthy pregnant women or newborn babies, having to buy maternity clothes, or being questioned about your pregnancy become huge emotional chores. However, after seeing the fallout from a sudden and unexpected loss, I am really thankful that we had warning.
We had plenty of time to create a birth plan for Leah. This process was very empowering, as it gave us the opportunity to communicate our choices for how we would spend our time with Leah, and it facilitated our planning of that time. We had time to adjust to the idea of seeing our baby with anomalies, and learned of the benefits of holding her and spending time with her. We had the opportunity to arrange for a photographer, pick out an outfit, make blankets, and begin to think about her burial. Most importantly, we were able to have some family members come out for her birth, and stay at the hospital to support us and to advocate for our wishes.
Because we were prepared, our experience was incredible. We were able to focus on our Leah, and make memories with her.
Parents who are blindsided by infant loss usually don't have this experience. Grief and shock prevent them from advocating for themselves. They may not be able to make the decision to hold or see their baby, and since not all doctors will advocate strongly for this (despite the proven benefits of doing so) they can end up with deep regrets. Similarly they might turn down photographs, or only have a few snapshots taken by the hospital. Worst of all, without someone there to guard their interests, precious mementos may not be collected, might be lost, or worse, might be thrown out. After listening to some horrible, heart-wrenching stories about things that happened to some of these families, I am convinced that all parents who suffer a sudden perinatal loss need time and an advocate to assist them in navigating their decisions, and to gently push them to reconsider choices, such as not wanting to see or hold their baby, that statistics show parents overwhelmingly regret.
When we received Leah's diagnosis at our 20 week ultrasound, the doctor immediately offered us our choices, but never advised us to take time to think or to consult with a social worker or counselor. His best plan was to have "our problem" (known to us as Leah) "taken care of" the next day. It shocked us that he pushed us to terminate Leah, to quickly resolve our medical situation, without even giving us even a few minutes to talk it over. My health was not at risk, we had four full weeks to obtain a traditional abortion under Illinois law (after 24 weeks they send you to Kansas), and because Leah's diagnosis had a 100% fatality rate, we would be allowed to deliver her early at any time. At that early stage of gestation Leah had very little chance of surviving labor. Yet he still wanted us to act the next day.
The insistence on immediate action (when none was medically required) that we encountered in our experience, and observed in the experience of those with unexpected stillbirths, seems at odds with the goal of providing optimal mental, emotional, and physical care. It treats the body at the expense of the mind and spirit. It allows no time for your heart and head to process the experience. Our bodies are more than bags of organs, muscles, bones and blood. We should receive treatment with this taken into account.
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