Dear Kaiser Permanente – Your Communication Sucks

Dear Kaiser,

I can’t believe I am writing about this again. After all, I thought the support and communication we received during our miscarriage was much better than our experience in 2010 but today, I learned something that is so upsetting and affects more people than just me.

So let’s start from the beginning. When we learned out baby died a few weeks ago, we wanted testing completed. The testing was offered as we have had multiple losses. We struggled with how to get the best “sample” of our baby for testing. In addition to testing, we wanted our baby back to ensure a proper burial or disposition for the baby’s remains. This isn’t something that Kaiser offers, especially for early losses.

By the way, you need to change that. This should be a standard offering for all your patients. I don’t think you realize how many families you are traumatizing by not giving them their options for a final resting place for their baby’s remains. At the very least, you can share with families their baby will be cremated and little about that process. For instance, is the baby cremated with medical waste or with other babies?

With our request, we knew we wanted to bury our baby and we knew about communal burial so we asked for our baby’s remains to be returned to us. No one told us what that process might look like and no one shared with us that our baby would leave the state. This is the information we were given:

How long will it take for tissue to grow?

6-10 days.

When will we receive the results?

In about 10-14 days.

When will we receive the baby’s remains?

They must be turned over to a funeral home and can not be returned to you but within the week your baby’s remains should be released.

It’s been 12 business days since our baby was born and 16 days since our baby was born and I have no results. Granted, they can come in any moment but I decided to call genetics this morning to check on things. I am not happy with what I was told.

First, Sandy shared with me that she is not the one I would call to check on things. Who is? No one told me that.

Second, Sandy shared that the baby was shipped to New Mexico to the lab. Really? That explains why it took so long for our baby’s remains to be released but no one ever shared the baby would leave the state. In 2010, we were informed the baby would be shipped to Texas but that didn’t happen. When I called about the baby’s remains on May 15th, we were told they were in the lab at Lone Tree. I was assured that’s where the baby would be the whole time. My doctor made it sound like the tissue he found for testing (placenta) would be separated from the rest of the baby. Which is it? What takes place here?

Third, Sandy shared that 10-14 days was far from accurate. So I asked her how long this would take and she could not give me an answer. In fact, she said, “I don’t want to give you an exact date because I don’t want to be wrong.” Can’t she tell us anything? We planned a naming and commendation ceremony for this baby. It’s coming up and I don’t want to have to cancel it. So what’s the deal?

I know that a 10 week baby isn’t a priority for you. I know that any early loss for you is really just a “medical event” in your eyes but this was my child, my baby and they are a priority to me. I would want to know where this baby was every step of the way just like I would for any of my older, living children.

It’s a common misconception that loss mothers and families treat their miscarriage as a medical event. A miscarriage is often a devastating and traumatizing event for many women. The medical provider has so much to do with how a woman copes and recovers from this loss. Given the fact that psychiatric care is rarely provided or covered under insurance, women and families are paying thousands out of pocket. Much of that is merely processing how the medical provider supported or rather, didn’t support, the family and provide their options; ALL their options.

So I went to your website to search for a pregnancy loss support group. This is all your website addresses and FYI, you need to change “Moving On” to “Moving Forward.” There is no “moving on” after loss. There are many issues I see what that particular web page on pregnancy loss. I don’t know why someone would write that pregnancy loss would hurt more if the mother has already experienced one. A mother experiencing one for the first time may still hurt tremendously. It’s belittling the first time mom going through a pregnancy loss and making her feel like she doesn’t have the right to grieve.

You offer no support for pregnancy loss. With stillbirth, you mention three websites where families can receive support but nothing for miscarriage which is more common. And another FYI, stillbirthalliance.org is not a support group.

But I digress, we need to return to talking about your lack of communication. What should a family expect then when they want their baby’s remains tested and their baby’s remains back? Where is the baby’s body? Is the placenta separated and sent to the lab and the baby stays in the Kaiser lab? How long does this process take? Why can’t I check on the testing? I want to know if anything is growing. I need to know how long this process is going to take. Isn’t there a typical time that this takes? Who do we call for follow-up? If it’s not genetics, who then?

Why is it that I have to ask all these questions? While I am so grateful for my midwife and the OB that performed the D&C, I do not understand why all these questions are coming up now and the information given was not correct. Don’t you have a form that you can give families that describes this process?

This is something else that needs to change Kaiser. I am stuck now, between canceling a ceremony in honor of my child or just going through with it without a proper name. My child deserves a proper name. This baby doesn’t need to be named Pat or Jean or some other non-sex specific name.

And just a moment ago, I experienced yet another one of your communication fails. Don’t you have focus groups to help make your services better? Ugh! Just help me already. It really doesn’t have to be this hard for families experiencing loss. Start here! Start with my book It’s Not ‘Just’ a Heavy Period; The Miscarriage Handbook. I guarantee it’s better than the nothing I was given after learning my baby died.

– Breaking the silence of First Trimester Miscarriage