The cascade of non-intervention: Emily’s story on the 8th anniversary of her death

Emily’s story as told by her mother Jenn:

Here’s what you really need to know about my daughter’s delivery: After nearly 4 hours of pushing, a senior nurse noticed a disturbing pattern on the monitor tracing. (A junior nurse missed it – as it likely would have been listening via stethoscope, since for the longest time the heart rate recovered – it just lost variability and also recovered increasingly slowly.) Unfortunately at that point the OB was in surgery. 10 minutes later her heart stopped. 5 minutes after that, she was born flat. She was resuscitated and put on a ventilator. The cause was pretty clear, particularly after pathology reports on the placenta, cord, and my daughter: the cord was around her neck twice, and very short between her and the placenta. The labour itself cut off the supply of oxygen from the placenta to my daughter.

We talk about risk-taking in labour but I don’t think people understand the risks they are taking. Some of us know. So here’s what I can share with you.

When my daughter was born vaginally, she was grey. They lifted her limp body over me and my first sight of her — so much for that breast crawl! — was more like a rubber doll. The room had burst into action when the code was called: There were about 15 people in the room and the anesthesiologist was primarily working on her. All I could see were their backs, hear them ripping into sterile packs and talk to each other. I was in shock for a number of reasons and my mind really couldn’t process what was going on. (This is one reason I am sometimes skeptical of natural birth stories where babies have had adverse outcomes. You could have told me just about anything and I’m not sure my logical mind would have been skeptical.)

They worked for probably 45 minutes or an hour. I have no memory of delivering the placenta, or the fundal massage that is on my charts, although I do remember the nurse showing me the sections of the cord that had been cut (three pieces, to get it off her neck and the baby out, I think); it was white, which the nurse remarked on. The OB stitched the tear I had and the epidural was removed, but I have no memory of that either. My focus was on my baby. I waited and waited for a cry that obviously never came, but that was all I could think of: When will she cry?

When they moved her to the NICU my husband took a couple of looks between her and me and then I told him to go with her and he did, relieved that I let him follow his instincts. He became a father in that moment; I could see it in him. This is what happens when your child has a birth accident: You’re not a single biological unit, and suddenly this is the kind of choice you are making. Who goes with the baby? Who goes with the mother?

When I first saw my daughter after delivery, she was in a NICU. The staff asked me not to touch her because they were concerned about the stimulation. I noticed that her chin was trembling and I asked the staff if she was cold. The nurse gently explained to me that what I was seeing was a seizure. She was on painkillers and anti-seizure meds and other things to stabilize her sodium levels etc. These are common results of this kind of injury.

I asked what the prognosis was. The neonatalogist told me that a good outcome would be “learning difficulties.” I heard this as learning disabilities and my mind — which races, by the way, planning a whole life in an hour while you’re lying there without your child in your arms — started to plan out tutors for reading. What the doctor meant, incidentally, was — sorry to use what has been a terrible slur, but the way I grew up this is the term that has meaning — retarded. Probably the diagnosis would have been CP, but I really don’t know.

I got a few hours of sleep thanks to a drug — bring it on, at that point — and when I woke up my daughter’s condition had worsened. As the brain struggles with hypoxia (and other organs by the way: kidneys, liver, heart), my very lay understanding is that it swells. The swelling causes more issues, like seizures, and can cause more damage. Our hospital had made the decision to transfer my daughter to one of the best children’s hospitals in the world, about 40 minutes away. I wanted to see her but they say they had to stabilize her for transfer and no one would be allowed in during that time.

So the next time I saw my daughter she was in a massive portable incubator that also dispenses medication, monitors vitals and does all kinds of things I guess. It looked like one of those sleeping tubes in Alien. The neonatologist from the big hospital had taken a Polaroid of my daughter for me to hold, with the NICU information on the back and reassurance that I could call any time of day or night for updates on my daughter’s condition. Then she sat on my bed and took my hand and told me that I should start to get my mind around the idea that my daughter’s condition was very, very grave.

I started to get it, around the edges of 9 months of hope and expectation. A little bit. Then they left for the new hospital, with my husband. By now my family had arrived and talked around me, but inside I was starting to plan a new life: where to build a wheelchair ramp. Running through our savings in my head. Deciding I would quit my career. I had worked in social services years before and I started to think about relief care, home support, physical therapy. My husband and I had joked we never wanted to have a minivan. I had a close friend with a severely disabled son who had recently received a totally tricked-out van for wheelchairs and I started thinking about that. These are the things you think about. This is what your life becomes, turning on a dime.

After I was discharged from the hospital my husband came to get me. We walked out alone. We had brought the baby car seat up into the L&D room — why we thought we had to have it right there I don’t know, along with our playlists for labour, nursing pillow, cute outfit and multiple cameras — and we carried it out empty and put it in the trunk, where it sat for 5 months, despite repeated trips. Trust me, I will never forget that walk out with no baby.

We stopped for clothes at the house – I was really tired and torn and sore and bleeding and should have had a shower, but I couldn’t wait five more minutes, all of a sudden, to get down to see my baby. I got walked through the handwashing and entry protocols for the NICU. My daughter was in a sea of machinery, lots of it beeping and hissing — the soundtrack of any NICU’s parent’s experience. It was a wash of relief to see her again; there is a deep pain at all that separation.

Which got worse.

That evening was the first time I got to hold my daughter. The nurses were so kind; it took three people to manage all the tubes and hookups just to lift her out and into my arms. Regardless of everything else, holding your baby for the first time is amazing. There is no feeling like it in the world. This is one of the things you put into danger when you take unnecessary risks.

From there the news went downhill pretty quickly. We had to wait 48 hours after the initial injury to get accurate scans. I walked into the room when the technician was doing an EEG which measures electrical activity in the brain.

He was crying.

Other scans, including a MRI, followed. By that afternoon the whole team gathered to give us the news: My daughter had suffered extensive brain damage (and other, but they focused on the brain). She had no pupil reflexes for light. She had no swallow reflexes. She could not move her arms and legs. She could not hear. She would never speak, see, laugh, roll over. The damage was deep down into the parts of the brain that are the most primitive. The staff was caring but direct. They described for her what the quality of her life would be.

What about neuroplasticity? We asked with our fancy-pants New York Times reading vocabulary. (So “educated.”) The brain is not able to recover when most of it has died, said the neonatalogist. Brain cells don’t regrow. (8 years later and stem cell research progresses, but it’s not that far yet.)

The other news, he said, was that she was learning to breathe on her own. Amazing, her little fighting body. Except…and everyone in the room waited for him to take his breath to take this one…he didn’t think this was necessarily a positive thing. He explained that no one could predict what would happen exactly if we took her off the supportive measures, but the longer we waited the more likely she was to survive, and if she was able to breathe on her own we would have a lot of complicated decisions to make down the road, including withholding nutrition. He did not recommend that we wait.

I’m not a scientist, but I am a trained observer of people. I watched this man tell us this. He believed it. He sorrowed for it. He was not distant or distracted. He was giving us, I believe, his absolute best from his years – he is very prominent – of experience. The nurses too. The technicians as well. In that room there were probably 50 years combined experience of watching children and infants with brain and other injuries.

My husband, who had been more aware and more present with our daughter as she was transferred and so on, and I had talked about this possibility the night before…the long dark night before. We had spent quite some time in quiet prayer and thought about it and we had gone over whether we were just afraid to raise a disabled child or not. (We were not. You don’t have to believe me but – we weren’t. She was our daughter.) We did, however, not want her to suffer if there was no chance of any kind of minute quality of life. So we already knew what our answer would be, but after the staff made sure we didn’t have more questions they gave us some time. We took about 45 minutes to let the information sink in and to be sure. To turn that possibility over into our present reality. Our daughter was basically brain-dead. It’s your nightmare scenario, as a parent.

We decided to take her off life support that evening. (For what it is worth, I don’t think we could have withheld feeding. For us it was one thing if she couldn’t breathe without machines; another to do the opposite of what basically every parent throughout time has done: Feed their kids.)) We wanted to get as much family down as possible, and we wanted to plan a baptism. So we did. I decided not to be in the room when they actually took the tubes out. Looking back I’m not quite sure what I was scared of – maybe that I would not be able to go through with it. So the nursing team did that and then they brought her out. All she had was an IV to keep her comfortable – hydrated and with painkillers.

It was the first time we held her properly. We passed her around to her grandparents and aunt after the nurses showed us how not to cut off her breathing. She had stridor; she was working for those breaths with a high pitched sound I will never forget. She lived through the baptism. She laid in my arms. She laid in my husband’s arms. Everyone else went home. We stayed the night with her. We changed her diaper. Slowly…slowly…slowly…over 16 hours, in fact, she stopped breathing. We couldn’t tell she was breathing for the last hour or so and the resident came three times before calling it. She had died. Not passed, not born asleep. She died.

Afterwards, her nurse and we bathed her. We made molds of her hands and feet. We dressed her (for her autopsy). We said goodbye. We walked out of a second hospital without our daughter – and without our hope. We had decided to call her Emily Hope before she was born, and so she was, but hope, as it turned out, was not enough.

A few days later we dressed her again for her funeral. We had about 200 people show up. Once we were past 32 weeks we had pulled out the stops. This baby was hotly anticipated by our wide clan of family, friends and colleagues. We had two dressers full of gifts. We had renovated our house to make it more baby-friendly. After the second trimester passed I spent days and days and days planning everything positive. We had struggled through miscarriages and other issues. I didn’t let a smidgeon of soft cheese or a bite of sushi past my lips; I didn’t dye my hair; I had a cold with no drugs, miserable for a week. I swam and walked and did everything right. In labour I was high on anticipation to meet this child.

It never crossed my mind – so much for positive thinking! – that she could be dying and birth attendants not quite realize it. I thought we were crossing the finish line. I didn’t know how subtle the early signs are, or how twisted thinking can get when the goal is to not do something that should, in fact, be done. I wasn’t aware these things still happen to families. (Once they do, the stories come out though.)

This is the reality of oxygen. I cannot tell you what our lives would have been like with just slightly better results – would she still be alive? Would she have choked to death one night when one of us didn’t wake up to suction her? Would she be in a home after our deaths? Or what our understanding would have been if it had been slightly worse, if she had been stillborn and we had not had the time with her that we had to cope and understand and see her as a living baby and ask pointed questions.

But I can tell you what it would have been like with a c-section, because since then I have gone on to have two healthy children. It would have been great. I might have thought wow, she looks healthy, how unnecessary was that? Cords are around the neck all the time! It’s no big deal! I might be on a forum upset about a scar right now.

But my medical team didn’t catch it or make conservative decisions in my baby’s favour.

And this is what happened. This is her story and mine.

Let’s get the arguing out of the way here: Yes, my baby died in hospital. However, she did not die due to a cascade of interventions. She died due to a negligent cascade of non-intervention. We essentially had the level of care I would have had at home: One birth attendant making decisions based on her philosophy of natural childbirth. As I was pushing I cannot tell you how many times she said to me “trust your body!” “You’re a woman, we’re strong!” “You were made to do this.”

My hospital was aiming for natural birth ideals (particularly low-c-section rates). When you aim for an ideal statistic rather than a case-by-case assessment, sometimes I think — combined with other factors — this is where you end up. But bluntly, it also took a lot of screwing up. Don’t think a single midwife is immune, where nurses & an overworked OB were not.

As for “not simply meant to live.” She WAS meant to live. You should have seen the fight in that little girl. Have a close look at her picture, when she was the healthiest and pinkest; the least scarred; when she still had hair (they had to shave it for needles and tests). You tell me that baby girl was not made to live.

She had an accident, like a car wreck or getting caught on blind cords or choking on a hot dog. These are all accidents which, as parents, we take measures to avoid. 99.9999% of the time, hospital staff would have caught this one. Her umbilical cord got pinched off during a vaginal delivery. There was nothing mystical about it. There was no way to control it. No amount of positive thinking would have helped. Nothing at home could have helped.

Had the proper interventions taken place, she would be running around just after her 8th birthday.

This isn’t about painkillers. It’s not about accomplishment. It’s about responsible, appropriate, knowledgeable decision-making in birth choices and during labour. This is what risk is really about.