a birth story for caregivers

Earlier this week I had an opportunity to tell my story, and my daughter's story, to a group of caregivers. I am lucky enough to have moved to a town near Carol, who runs this support group, and who is doing some excellent work to raise awareness of pregnancy and baby loss. She coordinated a three-day training for nurses, midwives, doctors, doulas, and birth professionals of all stripes to talk about giving care to families who have lost, or who are losing, a precious baby. The speaker was the wonderful Cathi Lammert, executive director of SHARE.

So on Wednesday afternoon I entered a large, dim conference room at our local hospital and sat in a row of chairs at the front of the room with other loss moms and dads. And we each told our story, and most of us cried, and a lot of the attendees cried too.

I am happy they cried. That sounds awful, but it's true. I have so much anger at my doctors for how I lost my daughter, for the fact that she died at all... It was just good to sit in a room with 50 professionals who give a shit. I wanted them to feel shocked and sad. Because maybe this means some other family will get better care in the future.

Another mom who presented at this conference gave me the idea of posting my presentation on my blog. I guess we are both very organized and had all our details written out! For me that was the only way to get through it - to be super prepared, to have rehearsed a lot, to read off a script. Otherwise I think my anger might have exploded all over the room. How off-putting! I wanted to stay calm, so I could be heard. So I wrote it all out, and here it is.

Oh, and I realized that for as long as I have been writing here I have never told you any part of Angel Mae's birth story. Some of it - some of the good parts - are here.

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My daughter, Angel Mae, was born on February 28, 2009 at 20 weeks gestation. Her cause of death was pre-term labor.

We received excellent care from the on-call midwife at the hospital. When I reached L&D my labor was far progressed; the midwife calmly entered the room and said, “Looks like we’re having a baby!” As a mother delivering so early, that simple statement was very validating. It helped me focus on the job at hand: giving birth to my child. It also acknowledged me as a mother and helped me begin an honest grieving process.

The midwife had seen losses like ours before and wasn’t rattled. She coached me, caught the baby, delivered the placenta, and answered questions calmly and compassionately. Our two nurses were inexperienced but followed her lead. They washed, dressed, and swaddled our baby and wheeled her back into the room in one of those baby carts. The midwife placed her in my arms, saying, “Oh, she’s such a little pumpkin.” Her lack of squeamishness was so comforting. We were actually able to show off the beauty of our little, loved child. I can’t begin to say how much it helped to be treated as though this was a normal birth—-even though the baby would not come home with us.

All the appropriate services were offered: to stay overnight, to move off the L&D ward, to see a chaplain... I learned later that not every family is given those courtesies and felt grateful for all the staff offered us that night. The staff stayed with us, signed a condolence card, and hugged us as we were leaving. I will never forget them.

Confusingly, that moment loss represents the best care we received during my pregnancy. Between weeks 14 and 20 we experienced on and off bleeding and a threatened miscarriage. This was a frightening period of pregnancy - we had a kicking baby, but no access to L&D. We saw OBs, midwives and an MFM, but none of them offered intervention to help my pregnancy stick. Some difficulties I encountered included:

1) Being left alone for an hour in an empty ward of the ER with an IV in my arm, a full bladder, and no call bell—the staff forgot I was there!
2) Landing in the middle of a turf war between a young radiologist who saw my cervix funneling and recommended cerclage and an established OB who sent me away saying the other guy was just young gun bucking for attention.
3) Being told by my OB it would be better to miscarry at 15 weeks than to give birth at 25 weeks because “those babies live.”
4) Calling the OB’s office with discomfort and being told that it was probably a stomach bug and to wait it out at home.

After all this, you might imagine what a strange gift it was – in the worst moment of our lives – to be met by that compassionate midwife who immediately treated me like a mother and our baby like a real child.

After our loss, care from my OB office did not improve. Some highlights include:

- no follow up call or note from my OB or anyone in her office after the loss;
- showing up for my postpartum appointment, only to find it had been cancelled and being shooed out by the receptionist while I was in tears;
- at a later postpartum visit, being told by my doctor that, due to confusion about my ovulation date, my loss could be considered “just a miscarriage”; and
- being chirpily asked by the check-out receptionist how my baby was doing.

It would have been such a simple thing to send a note of condolence to our home, or to put a big red flag on my office file so staffers could respond appropriately. I was truly surprised that the practice had no protocol for addressing mothers who did not have successful pregnancies. Instead my loss was downplayed and treated as an inconvenience. Needless to say, I did not remain a patient in their practice.

I hope that in the future all families will receive the level of fearless, practical, and compassionate care that we received on the day of our daughter’s birth. I also hope that more hospitals and midwifery practices will make improvements to their care protocols for women between 14 and 20 weeks of pregnancy, and, most especially to their care protocols for their patients who lose a beloved baby.