PTSD Helps Parents Keep Their Medically Fragile Children Alive — But At What Cost?

“One of the big things that still gets me is that I had to do chest compressions on my own child.” Meghan Shuttleworth’s voice is surprisingly steady as she says this to me.

She continues, “I have to do CPR training for work, which I just did a few weeks ago. And I had to leave the room at one point. Because all of that stuff just came flooding back. I can't even explain what it's like to have to do chest compressions on your 6-month-old baby.”

I am not unaware of the realities that parents like Meghan — parents who are raising medically fragile children with life-long health and developmental complexities — face daily. Meghan is certainly not the first mom I have ever spoken to about having to give her own child chest compressions. Still, after Meghan finishes her story, I struggle to mask the unsteadiness in my own voice as I tell her how very sorry I am. Then I remark on how adaptable we are, how humans can learn to live with just about any reality, however terrifying.

And it is true. We are built to survive through the realities that face some of our children, like the steep odds that Fiona was born to: at 10 weeks premature, weighing 3 pounds, with five organs on the outside of her body, Fiona was given two weeks to live. She started her life in the Neonatal Intensive Care Unit (NICU); soon she will be 9 years old. Meghan believes Fiona survived because, “We just fought, and she fought, every single day.”

We are built for survival, but sometimes the ways in which we survive — and ensure the survival of our fragile children — have steep costs.

There is very little investigation into PTSD within populations of primary caregivers of children who live with life-long medical and developmental complexities that have led to long-term repeated life-threatening experiences.

While Post-Traumatic Stress Disorder (PTSD) is a condition that is most commonly associated with combat veterans, it can result from exposure to any traumatic event, including witnessing a severe medical emergency. Individuals who develop PTSD continue to experience stress as though the trauma is ongoing — and this can happen acutely or chronically. In order to be diagnosed with PTSD an individual must have the following:

• one re-experiencing symptom, such as flashbacks, bad dreams, or frightening thoughts;
• one avoidance symptom, such as staying away from places, events, thoughts, or objects associated with the event;
• two arousal and reactivity symptoms, such as being easily started, on edge, or angered; and
• two cognition and mood symptoms, such as lapses in the traumatic memory, negative thoughts, distorted feelings of guilt or blame, and loss of interest.

Dr. Jeremy Hirst, an expert in adult and pediatric palliative care psychiatry at University of California San Diego explains, however, that PTSD looks different in different people. "The typical things we think of with PTSD ... can be expressed to greater or lesser degrees depending on the person. The common theme, however, is that these symptoms cause immense suffering and dramatically impact the person's life in a variety of areas," Hirst says.

Through recent research studies, it is clear that PTSD is a factor in the lives of parents, especially mothers, raising children with disabilities. For example, we know that moms raising children with Autism have stress hormone levels consistent with those of combat veterans (Journal of Autism and Developmental Disorders). We know that NICU stays can produce PTSD in new parents, especially new mothers. We know of a longitudinal study in Western Australia which found that mothers of children with an intellectual disability were 150 more likely to die of cardiovascular disease. Further, the PLOS One paper found, the same mothers were 200 percent more likely to die from "misadventure" — death resulting from homicide, suicide, or accident.

Dr. Katherine Junger, a clinical psychologist at Cincinnati Children’s Hospital who works with patients with epilepsy and their families, sums the effect up: “Caregivers of children with complex medical conditions face a 4-fold increase in risk for PTSD compared to the general population.” However, Dr. Junger says, “most of the research on PTSD in caregivers has been done in parents of children who had cancer." As a result, she explains that very little is known about PTSD in caregivers of children with life-long medical and developmental complexities that have led to long-term repeated life-threatening experiences, like those facing a number of Dr. Junger's epilepsy patients.

PTSD May Be Dramatically Underdiagnosed In Parents

However, given the studies in other overlapping populations, it is clear that PTSD is present in this population. It is also clear that it is dramatically underdiagnosed. Hirst explains that a barrier to diagnosis is physicians' understanding of PTSD. "I still think many medical providers believe you need to have exposure to physical violence/combat to have a diagnosis of PTSD, thus they would not make the diagnosis," he says. Hirst continues, "While [the caregivers] may continuously be in a medical system that is focused on their child, that system is unlikely to be paying much attention to, or have the resources to address the needs of the caregiver." While she directed Romper to some resources for helping families dealing with medical treatment available at the National Child Traumatic Stress Network, Dr. Junger agrees, “We in the medical field need to work harder to more clearly understand what helps families adjust well, how we develop those skills in more families, and how to identify and respond when families are struggling.”

Junger explains that another barrier to identifying PTSD in caregivers is the caregivers' unwillingness to address their symptoms. “The true rates [of PTSD in these populations] may actually be higher, as one of the reasons parents cite for not participating in research about PTSD is not wanting to revisit such painful memories,” says Junger. Parents of medically complex children may be unlikely to bring up their own health concerns with their children’s medical teams, and, even if they recognize their need for support, they may face significant financial and logistical barriers to receiving care.

In the process of researching and finding participants for this series, I bumped up against some of the challenges in understanding the realities of PTSD in this population. While I had a lot of initial interest from moms to participate in the series, it was challenging to find people who were willing and able to talk about their experiences in detail. Mother after mother responded to me with interest, and then, without warning, stopped replying. Mother after mother said that while she thought she had PTSD, it probably wasn’t as bad as what other mothers experience, or not as bad as the veterans she knew. Some expressed discomfort, guilt, or even anger about engaging on this topic, because their children are the ones who actually experience the physical trauma. Also, unsurprisingly, others had medical emergencies arise in the middle of the research period, and were unable to continue participating.

Avoidance Helps Disguise The Underlying Condition

One mother I spoke with, Katie Banks, whose son has a genetic mutation in the gene SCN8A which leads to epilepsy and other neuro-developmental challenges, explained that she was having trouble responding to my questions. “I’m trying to come up with a response that is worthy of your time," she said. "I just draw a blank. It’s almost as though I’ve not allowed myself to actually go through the process of feeling those emotions. I know it’s there because the panic and anxiety are just sitting there below the surface … when I try to face that big scary monster, it’s just empty darkness.” At the same time, she said, “I totally don’t feel worthy of even being a part of this compilation because what we have experienced, what I have experienced, is so minor compared to the trauma of so many within our community. It’s funny how we do that to ourselves you know. Minimize our experiences.”

Some moms I approached were unwilling to unpack their thoughts on the topic at all. One individual I spoke with, who has asked to remain anonymous, seemed interested at first. Then when I asked her to explain a bit of background, she replied by saying she couldn’t engage anything brief about it. She went on, “I survive by NOT thinking about it. Reliving any of it feels counterproductive because ultimately, nobody could fix or even help it. My whole life now is about creating happy times while my son is healthy.”

The thing is, it isn’t surprising that so many mothers engage in avoidance surrounding their PTSD — avoidance is, after all, a primary symptom of PTSD.

As I engaged in conversation with the mothers included in this project, I saw other potential symptoms of PTSD, such as a very flat affect when recounting emotional events. I noticed ritualized activities that the participants had developed as methods to get through, such as counting days between seizures. While in conversation with one participant, Faria Khan, I was concerned that she might be having a flashback as she recounted her son’s first seizure. “I am looking at the place right now in my living room where I stood holding him” she told me, and shifted her language to the present tense — as though the event were happening all over again. Other effects of PTSD were reported by participants — including nightmares, panic attacks, inappropriate anger, despair, and difficulty focusing.

These symptoms took most of these mothers by surprise. No one on their child’s medical teams warned them about the effect that trauma — like having your child turn blue in your arms, or almost giving birth in a helicopter — can have on parents in these situations. Time after time the mothers I spoke with said that no one ever asked them if they were OK. As a result, a number of them reached very serious tipping points before seeking the help they needed. Faria Kahn developed a number of challenges to her physical health, such as hypothyroidism and rheumatoid arthritis. Fortunately, a personal physician recognized signs of PTSD when Faria would break down every time she came into the office. “[My doctor] knew there was a connection between my physical health and my son's health,” she said.

Another mother I communicated with, Sarah Hollack, explained how she realized she needed help: “I sought help through therapy because the occasional bouts of depression became more frequent and I also began to lash out in rage when angry (something I hadn't experienced much before these last two years). Knowing that I was at times violent … and how out of control I felt was the tipping point that told me I needed to talk to a professional.”

Many of the participants made it clear that their children’s medical teams not only lacked an understanding of what they were experiencing, but they also often seemed to have little understanding of how to give them information about their children in non-traumatic ways.

Mackenzie Wardrope, whose daughter Adelaide began having violent seizures at 6 weeks old without apparent cause, had a doctor walk into the hospital room when she was alone with her daughter. “He said, ‘your daughter probably has a degenerative brain disease.’ And he just left. So, I spent all day crying my eyes out because, what did that mean? I had no idea … I mean, this our baby. And he just had no compassion.”

Finding Help When The Trauma Is Ongoing

Beyond having to try to hold it together emotionally, often parents in these situations are left with inadequate medical support outside of the hospital. Elena Hung explained that the in-home nursing care they received upon discharge from the hospital did not provide the kind of support her daughter needed: “When we hired the nurses ... they weren't either comfortable caring for a child like Xiomara, didn't have experience caring for a child like Xiomara, or ... quite honestly didn't want to learn.” As a result, Elena struggles with trusting medical professionals, “You know our nursing agency ... sent us nurses who they told us were trained and qualified to care for our child and I came to learn, and in a very traumatic way, [they were] not. So, I'm going to see for myself and I'm going to test you according to my standard if you're qualified to care for my child.”

In addition to not having the support they need from medical professionals, often parents in these situations lack even the most basic support from family and friends that's offered to their peers with typical-developing, healthy children. Mackenzie explains, “It's incredibly isolating when you have a medically fragile child, because with that comes a lot of fear from people that don't understand and instead of reaching out and trying to understand, they turn their head the other way and make excuses.” Because the situations facing these moms may feel so out of the ordinary, friends and family may feel they don’t know what to do or what to say. They may not know how to help. For Mackenzie, the answer to those problems is simple, “It takes work. It takes effort. It takes asking questions, being present.”

Dr. Hirst sees these concerns arise in his practice, where caregivers express that there is often an initial period of support, however, he says, "as time goes on there is fatigue and a decrease in the amount of help or care that is offered from friends. It seems it would be good to remember that a caregiver is on-duty continuously, forever. Chronic illness is like a marathon, except marathons end after 26.2 miles." Caregivers learn ways to cope through the things that others can turn away from, because they don’t have a choice. So, they have to find the ways to make it through the large medical traumas, as well as the apparently smaller, but perhaps more pervasive ones.

Enrica Haelan explained that leaving her career to become a full-time caregiver to her son Rafi was, for her, “the hardest change since Rafi's birth.” Faria also left her job to take care of her son Iman, it isn’t the career change that has gotten to her: it is the lack of conversation. “Literally all day long … for three years, I have just talked to a human that does not talk back to me.” She does it gladly, in hopes that her son understands, if not her words, just her desire to communicate with him. But it is incredibly difficult.

Dr. Junger explains that treating PTSD with the ongoing threat of medical crisis may be similar in some ways to treating PTSD in service members still engaged in active combat.

While mothers in these situations are going through trauma after trauma, and being left with very little to cling to for support, they are unlikely to have the space to seek care for themselves. And if they are able to seek care, the care they need is different. Dr. Junger explains that treating PTSD with the ongoing threat of medical crisis may be similar in some ways to treating PTSD in service members still engaged in active combat. Junger says, “Compared to someone who is coping with the lingering traumatic symptoms resulting from a past event ... it is the case that parents of medically complex [children] may realistically face the possibility of future, unexpected, and serious threats to the health and wellbeing of their child.”

Dr. Hirst agrees that the recurrent and ongoing stressors need to be treated differently: "Living with uncertainty is incredibly challenging. This level of uncertainty leads naturally to a heightened sense of arousal, needing to be on constant alert since once cannot rely on the child's body to do things we normally take for granted." Indeed some of the symptoms of PTSD evolve as a natural reaction to deal with the threats associated with a trauma. Junger explains, “The goal of treatment is not to eliminate anxiety, nor would that be realistic or even adaptive, as anxiety has survival functions that allows us to respond effectively to threats. It is expected and understandable that these parents have increased anxiety.” Junger continues, “However, the fight or flight response is very taxing on the body and is not designed to be on for long or repeated periods of time or it can create emotional and physical strain.”

These strains can yield a child’s safety. And they can come at a high cost.

It is a cost I understand in my own body. Just over seven years ago, my 3-month-old daughter’s heart stopped beating not long after I walked through the doors of an E.R. holding her limp blue body. Even as I type these words, I can still feel the weight of her body in my arms. I can still smell the air in the room. I can still hear the sound the receptionist made as she stood up in shock when we walked through the door.

My daughter was, against all odds, resuscitated. She survived. She has gone on to live a beautiful life that is also filled with extreme developmental and medical challenges, which, like the cause of her cardiac arrest, stem from several genetic disorders.

Her heart beats the same as it did before.

But mine doesn’t.

And I’m not sure if anything will ever change that. What can change is the understanding of the realities of PTSD in caregivers like myself — by our families, friends, medical practitioners, and communities. That alone can offer some relief — merely being seen as we now are, transformed into mothers for whom our children are both the greatest sources of our trauma, and our greatest reason to keep moving forward knowing what still may come.

What can change is people looking at us as superheroes who were somehow made to withstand a life of uncertainty surrounding our children's health. We aren't superheroes. We are moms. And we need help to make it through.

Here are some of our stories...

If you or someone you know is experiencing symptoms of PTSD or a related condition, contact the National Alliance On Mental Illness HelpLine at 1-800-950-NAMI (6264), Monday through Friday, 10 a.m. to 6 p.m. If you are experiencing postpartum depression or anxiety, you can also contact the Postpartum Health Alliance warmline at (888) 724-7240 or Postpartum Support International at (800) 944-4773. If you are thinking of harming yourself or your baby, get help right away by calling the National Suicide Prevention Lifeline at 1-800-273-8255, or dialing 911. For more resources, you can visit Postpartum Support International.