My most recent doula client, Maude, had an incredible birth. She hoped to have her baby at home and labored there with grace and vigor for a day.

MaudeLabor
When she was deep into active labor, this woman thudded up and down her stairs stairs with the consistent purpose of a metronome. (And that expert on-the-stairs-back-rubber, is Anna Mahony, dream-doula, who I sometimes work with.)

Three hours into pushing, she made the decision to transfer to the hospital. Within an hour after getting there, she pushed her baby out to discover, much to her surprise, that it was a girl. We all sighed with relief that we wound up at the hospital, since her daughter needed some help with her breathing at the NICU. She later developed some other complications that resulted in her transfer to a NICU at a nearby children’s hospital. When I met with Maude 2 weeks after the birth, her baby girl was healthy and happy and at home. As we watched Baby Girl nap peacefully in her swing, Maude launched into a passionate recounting of her experience at the NICU. It was so moving and real that I invited her to write a guest post here. I know that her experience is not an isolated one. I also know that her story and candor will be eye-opening at the very least and validating and inspiring to those of you who have spent time in NICU-land.

***

I feel obligated to start by saying this: I am grateful beyond words that my daughter is alive and well. She may not have been, had the skills of the NICU staffs of two hospitals not been so competent. And I shudder to think of what might have happened to our family had we given birth in a country or part of the United States where medical care is not so advanced or covered by health insurance (kind of) or accessible to nearly anyone. I am grateful that she will likely not experience any long-term disability or complications from what happened at her birth. I am GRATEFUL for her stay in the NICU.

AND

I am flabbergasted, horrified, and raging mad.

I say “her stay” in the NICU on purpose… For it was made clear to me early on that this was HER stay in the NICU, not ours. The person who was INSIDE OF ME 24 hours ago was now considered a separate being, whom I was supposed to turn over to strangers to care for while I tried to mentally comprehend her medical issues, communicate these to our loved ones, and take care of my throbbing body that had just experienced the most exhilarating, intense experience of my life.

Upon admittance to the NICU, my husband and I were told our daughter was allowed two visitors at a time, and we counted as visitors.

I wanted to shout, “I am her MOTHER (even though this concept was only a few hours old to me). Her MOTHER!!! She lived inside me a few days ago. No me. No her. Get it? I am NOT A VISITOR. I am an integral part of her care and well-being. I am like the ventilator to which she is attached. I am like the bed on which she is lying. I am (literally) like the feeding tube that is trailing down her throat. I am an indispensable part of her medical care!”

The system in which we found ourselves did not see it this way.

The system saw me as a visitor, at best. At worst, I was an intruder, a distraction, an obstacle to my daughter’s healing. The NICU was a large, open, fluorescently lit room lined with cribs and bassinets on all four walls. There was  no privacy for our family to talk, to cry, to sleep, to figure out what the hell just happened to us. There wasn’t even a place for us to sit down at her bedside.

We tried to retreat to the “waiting room” where we often encountered unfortunate families who spoke loudly, using profanity, about who they were preparing to “fight” upon return to their home communities.

We tried to retreat to the cafeteria, but it was loud and cluttered, and sometimes it was difficult to find a clean table. Plus, it was on a completely different floor from my daughter. I didn’t like being so far away.

We even tried to retreat to the chapel, but the chaplain (!!) told us that sleeping in there was inappropriate. Sleep was all we needed. I can pray anywhere.

Most of the nine days we were there, I had to fight to remain by her bedside and not feel like a distraction to the medical professionals attending her. On the first night of her stay, five doctors came in for “rounds” where they discuss the patient. One of the doctors asked me if I had questions for the main doctor. I asked her about seven or eight questions. The other doctors started fidgeting, annoyed at having to stand and wait through my questions. Finally the nurse jumped in, “You’ll have a chance to talk to the doctors again in the morning.” I guess I asked too many questions.

One reason I was treated as such an anomaly in this particular hospital occurred to me slowly, over the nine days of her stay. This particular hospital tends to serve many “Medicaid” (read: poor) patients. Why they are funneled to this hospital is a mystery to me. Why their children need intensive care is not. In the NICU there are mainly premature babies, many of whom likely did not receive adequate prenatal care or nourishment. This NICU is used to poor parents. Poor parents tend not to ask questions. They may be intimidated by medical professionals. Poor parents rarely have the luxury to stay at their child’s bedside all day. They have to go to work. So the NICU has developed policies, facilities, and protocols accordingly. And naturally, the staff there were ill-prepared for my borage of questions and constant attempts to stay at the center of what was happening to my daughter.

This makes me RAGING MAD. Poor parents and their children deserve the same kind of care as any other family. They deserve everything I want and am about to ask for.

1) Deliberate coaching on pumping breast milk.

It was 2:00 am on the first morning of her stay in the NICU. (I elected to spend the night, even though there was not an adequate place for me to sleep in any restorative way. Leaving my daughter in the hands of strangers while she was 36 hours old while I went home to my bed empty-handed just didn’t seem doable to me.) I said to the nurse that I wanted to learn how to pump breast milk. This fabulous nurse called her friend from another unit to come over and help me in the “mother’s room” (a hideous, windowless closet with one, overhead fluorescent light and a breast pump with no instructions). The friend came and showed me how to operate the machine and set up the plastic flanges on my breasts. She gave instructions to pump every two hours. As a result, the nurses were eventually able to administer my milk to her via a feeding tube instead of formula, and I had an established milk supply several days later when my daughter was allowed and able to nurse.

Every new mother should be offered pumping instruction in her first visit to the NICU. She shouldn’t have to remember to ask.

2) A clean, private place to use the bathroom.

After a woman has given birth, going to the bathroom is a new experience. New moms often have stitches, either in their abdomens or in their vaginas. A filthy, windowless hospital bathroom is not a place to care for open wounds. New moms have supplies they need while in the bathroom. Placing my bag of said supplies on the filthy floor of the bathroom stall (upon which I KNOW someone vomited less than 24 hours ago) is not hygienic. So I balanced the heavy bag on my shoulder while tending to myself.

New moms need sanitary napkins, ice packs, garbage cans within reach of the toilet, spray bottles, glasses of water with which to take their prescriptions, and toilets that are higher than normal so we don’t have to squat so low. In short, we need private bathrooms.

3) A clean, private place to eat.

I was told upon arrival to the hospital that it is critical that I eat a lot and eat well to establish and maintain milk supply. In the next breath, I was told I was only allowed to eat in two places: the waiting room (aforementioned disaster) and the cafeteria (on another floor from my kid). I was also told that I was afforded one meal per day from the hospital. They would deliver this meal to the NICU, but I had to transport it to an “eating area” to consume it.

4) Have a doctor say to me, “You are an integral part of your daughter’s wellness and healing.” (And have said-doctor believe these words.)

I fear the neonatologists and other doctors were not trained (or forgot) that the presence of a neonate’s mother is CRUCIAL to her surviving and thriving, especially when in critical condition. Doctors certainly did not express this verbally, and the facility in which they work does not express this non-verbally. I was given small squares of fabric that I was to wear close to my body and then place in her bassinet so she could “smell me.” Guess what? If I STAY IN THE ROOM with her, she can smell me too. I found these fabric squares to be insulting. If I were provided a CHAIR to sit in, I might feel more welcome to stay.

5) NICU spaces should be designed to encourage family participation.

Having nowhere for a mother to sleep, breastfeed, eat, or even sit sent me the message, “Go home. We’ll call you when we’ve healed your child.” Having this exclusion constantly rained down upon me made me want to strangle the medical professionals who designed this standard of care. I absolutely could not go home, at least not for the first 48 hours. After that, I felt so defeated that I started to force myself to go home each night. There was literally nowhere for me to be at my daughter’s side.

A nurse said, “You should go home to rest and be ready when your baby does come home.”

I smiled and nodded at the time, but that comment has gnawed away at me. Some of my friends would mention that at least there was the silver lining of me having some extra time to rest. I adore these friends. And I know they were just trying to say something kind. And I feel compelled now to share why the concept of resting at this particular time is a complete crock.

If you think you don’t sleep well when your first-born daughter is cooing or crying in the bassinet by your bed, try sleeping with her 15 miles away in the care of a stranger.  That, my friend, is the definition of NOT sleeping well.

Coming home was not restful. My husband and I followed the same, breathless routine upon arrival home each night. After crying and shaking and heaving in the car the whole way home, I would peel myself out of the passenger’s seat, walk in the house, strip off all of my clothes (which were filthy, thanks to the condition of the hospital) and proceed upstairs to start pumping. My husband would throw all of our clothes into the washing machine, and provided the hot compresses, cold compresses and all supplies necessary to kick-start a milk supply with a breast pump in the absence of an infant. I would call the hospital to check in with the night nurse about how my daughter was doing, remind them that we didn’t want her to be given a bottle or pacifier or formula, and thank her for taking care of my girl. After pumping for 45 minutes, my husband would take the expressed milk and my plastic pumping supplies down to the freezer. I would set the timer on my phone for two hours, and my husband and I would wake up to repeat the process. Somewhere in there he would bring up the newly cleaned clothes for us to wear again.

I want to see a standard of care that acknowledges the neonate and mother as one unit. When a father or partner is in the picture, this person should also be included in the unit. These two adults are not visitors. They are pieces of the child’s care plan that are indispensable.

I want to see individual rooms for neonates and their parents. Period. With bathrooms, eating trays, and windows, just like other patients in the hospital. If neonates could talk, I’m sure they would request the same.

I must finish where I started.  I am grateful. I realize that my girl’s stay in the NICU was very short by most standards. She was born at full-term and therefore was able, eventually, to breastfeed well. All things considered, she recovered quickly. I’d like to think at least part of this is due to my fierce wrangling to be there, to advocate, to do everything I could to keep her healthy in the ways that felt right to me. And I feel deep gratitude to the to the skillful nurses, doctors, and researchers who contributed to her wellness, the manufacturers of products and drugs she used, and the millions of babies who went before her to pave the way with knowledge and skills to help heal her particular illnesses.

And

I want better. I want better for families of means and families without. I want better for moms who don’t know how or what they should ask, and I want better for moms who are pains in the neck and ask “too much.” I want better for all babies.

What I want is out there.