Anyone who has ever had a baby knows that there is no magic manual that tells you how to take care of your child.  You figure things out as you go, making plenty of mistakes along the way, and you slowly adjust to what it is your child really needs and to your relationship with your child.  But what about when that child never comes home?

I gave birth to my daughter Colette when she was 24 weeks and 5 days.  She spent her short life in a NICU incubator. My husband and I got to hold her for the first time when she was nine days old, as she was taken off the machines and died in our arms.  There is literally nothing that prepares you for that.  I remember after we had done everything, after a photographer had come and taken pictures of her, walking from the hospital to our car, alongside my husband and parents, and thinking, “This is not real, she’s still alive, I’m just going home for the night to come back tomorrow.”  Devastatingly, I did not return to the hospital—and no one prepared me for everything that came after.  Most importantly, no one told me that I could have used a postpartum doula to help with the transition and my recovery postpartum and grief.

Why would I have wanted a postpartum doula?  Well, for many reasons, but basically because I was lost. Because although I did not have a baby I could see anymore, I was still going through everything physical that you do after giving birth—and I was doing it while also dealing with soul-crushing grief. 

Here are some of the ways I feel I could have benefited from a postpartum doula.

Breastfeeding support

I had been pumping for Colette and just a day or two before she died, my milk was really coming in and I was producing significantly more than just the droplets that happened at first.  I was so excited when that happened and felt like I was providing her with everything I could.  When I got home after Colette died, seeing the breast pump felt like a punch to the gut and I quickly packed everything up and asked my sister to deliver it back to the hospital where I had rented it.  I did not want to see it again.

But, here’s the thing.  Just because my daughter died or just because I packed up the pump did not mean that my milk magically stopped.  I was still producing milk and so I felt the fullness in my breasts, pain on top of pain, and I also occasionally leaked.  I had no idea how to stop or even slow down the milk and so I suffered in pain until eventually my body naturally stopped.  Then, as we approached Colette’s due date a little over four months later, I found myself leaking once again, as if my body knew that I was due for a baby, but forgot that in fact my baby had died.  I would have loved to have had a postpartum doula to spend the time with me, to tell me that I did not have to quit cold turkey, to have walked me through what weaning would have looked like, or how to quit in a way that would not have been so painful.  I then could have used those skills and knowledge to then perhaps be able to treat myself as we approached September and Colette’s due date to stop the leaking right away instead of it lasting several days at a time when triggers were aplenty.

Even more importantly, as I found out months later, I would have liked to have been given the option to continue pumping, perhaps even as I was slowly weaning, and donating the milk.  It’s hard to go back in time and think of the decision I would have made, but it would have been great to have an option, a way to still do what I was already naturally doing, but to give back, to help another family, much like Colette was helped with donor milk for the first couple of days before I started producing.  Never being given this option felt like being robbed of an opportunity I might have loved, but even more so, it felt like with so much out of my control already, I could have at least had control over one piece.

C-section recovery

I had an emergency c-section and a classical cut, which means that the recovery time was substantial and often painful.  Even for me who has a high pain tolerance, I found it difficult to move around, even months later.  And the abdominal binder that the hospital gave me was tricky and I ended up at a follow-up OB appointment where my OB said “Ummm, you have it on wrong!” and fixed it for me.  That came after days of wearing it incorrectly and it would have been nice to have had someone to show me so that it could have done what it was supposed to from the beginning.  I moved around with uncertainty, I tried not to do anything that would hurt, but I still don’t know if doing things that way was helpful or perhaps even hurtful.  Having a professional as a support person to give me exercises, tell me what to do, how to treat my incision, etc. would have been amazing.

Emotional support

We hear a lot of talk about postpartum depression and anxiety. The instances of this are higher and often more intense for parents who have a difficult pregnancy, a traumatic birth, a NICU stay, or a loss.  I had them all and as a lifelong anxiety survivor, I was even more prone to the gamut of perinatal mental health conditions.  I think back to having difficulties bonding with Colette while she was in NICU.  While everyone else seemed to be able to talk to her, to read to her, I found it difficult to do the same.  Then, after her death, it seemed like everyone was concerned about me, but in the hushed, whispered tones of “She needs to move on” and not in the “Oh, so, she’s just given birth and between hormone shifts and changes and then mental health conditions and then grief, she may not be okay for a little while.” 

I had a wonderful partner, supportive family and friends, yet there were often times where I felt so alone, like I was the only one to ever have any of these feelings.  Having a professional to rely on, who could talk with me and let me know if what I was feeling was normal or worrisome, and to help talk me through processing it, would have been invaluable.

We do not talk enough about the critical role doulas play in maternal and infant health, but even when we have conversations, we often omit postpartum doulas—and we definitely omit postpartum doulas when it comes to parents who have lost their child.  Grieving parents are still very much parents and still have postpartum and parenting issues.  We need help and support, and doulas can help us get exactly what we need.

Michelle Valiukenas is the proud mom of her angel Sweet Pea, who she lost due to miscarriage, her daughter Colette Louise, and her only living child, her rainbow baby Elliott Miguel. Michelle is the executive director of The Colette Louise Tisdahl Foundation, which financially assists families dealing with high-risk and complicated pregnancies, NICU stays, and loss. Michelle also participates and advocates on issues of maternal health, maternal mortality, infant health and safety, and pregnancy complications. Michelle lives in Glenview, Illinois with her son Elliott, husband Mark, and dog Nemo.