With A Medically Fragile Child, You Need To Mourn The Life You Imagined

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Photographs by Juliette Fradin

For families with medically complex children, each day is a story of survival. Parents' lives are entwined with the medical system that keeps their children alive, and yet go unrecognized by that system when it comes to identifying and treating the ongoing effects of trauma and uncertainty. This Changes Everything goes inside the lives of six families to look at the prevalence of PTSD among caregivers, and consider the steep costs we demand of those fighting day in, day out for their families.

Elena Hung lives in Silver Spring, Maryland, with her husband and her two children. Her younger child, Xiomara, is medically complex, born with a number of health complications that affect multiple systems in her body. Elena, an attorney, advocates for the wider community of medically-complex children through her work with the Little Lobbyists. Elena says that the traumas she has experienced along with Xiomara are something you carry with you as a parent. This is her story, as told to Hillary Savoie.

I had a great pregnancy, great birth, but, 15 minutes after my daughter Xiomara was born, she required 100 percent oxygen support. She was rushed to the Neonatal Intensive Care Unit (NICU). And then transferred to the local Children's Hospital. She has since been diagnosed with multiple serious health issues affecting her airway, lungs, heart, and kidneys. She uses a tracheostomy (a surgical opening created in the windpipe in order to allow access to the trachea) to breathe and a ventilator for additional respiratory support overnight. And she also has a feeding tube (a surgical opening created in the abdomen into the stomach) for all of her nutrition.

Xiomara spent the first five months of her life in the hospital. First, she was in the Cardiac Intensive Care Unit, and then [she was transferred] to the NICU. In the NICU, everything so new. And unless you've been a parent with a child and the NICU, there is really no way to understand it, I think. It is definitely a survival mode, I would describe days as “Hurry up and wait.” There's a rush to figure out what's going on. And then there's just a lot of waiting time where we're just waiting for Xiomara to grow to get bigger, to just stabilize. There are a lot of boring moments, which are actually the best moments because nothing crucial is happening, I guess.

Xiomara is Elena's second child; the level of medical care Xiomara required around the clock was a huge shock to her mother.

But the trauma of mourning the loss of a healthy child is something that weighs very heavily. I think those early weeks and months that I was there [in the NICU], I was constantly trying to adapt to our reality in a very short amount of time. I was trying to really let go of the postpartum that I had in mind. For example, I had marked on my calendar these activities that we were going to do and the playdates that we were going to have. I had marked on my calendar the storytime [at] a library, thinking I’d go. I had plans for when she's three months, four months: I'm going take her to the library, meet up with my friend. So as the days went on and the weeks went on and the months went on, I was constantly being reminded that this is not the postpartum that I had envisioned and this was not the baby that I had envisioned. I was constantly adapting.

Then when we came home. We were fortunate to be approved for Medicaid. Medicaid was paying for home nursing and everything else that our insurance was not. So, we were very fortunate in that sense. [Interviewer note: Not all states provide this kind of supplemental Medicaid support and in states that do there is often a waiting period for approval for services.] However, our home nursing was not the most reliable. And the level of training that our NICU nurses had compared to what the home nurses had was quite different. We had the same baby, the level of care Xiomara required was the same, but the level of nursing care was not the same. A lot of the trauma that I experienced had to do with the insufficient level of care that she was receiving from the home nurses.

Elena carries her daughter Xiomara and Xiomara's pulse oximeter, which measures the level of oxygen in her blood.

I have an older son, I took care of him. I think of myself as a good mom. So, it was shocking in that we would need home nursing. I was surprised that Xiomara’s diagnoses required that level of care. That took some getting used to. That this wasn't a child that we could just, you know, go to the playground with or go and leave at drop-off at daycare. And then the second shock is when we hired the nurses, that 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. And didn't want to be trained. They were there to change her diaper and give her a bath. But in terms of the medical care, they just weren't up to par.

In the hospital we had nurses that we could leave her with [and] we knew that she was safe because it is a hospital setting. And if anything went wrong, she was already where she was supposed to be. At home, that was certainly not the case. I never felt safe leaving her with the home nurse by herself. I was working. So, I worked upstairs in the home. I was able to do that. My husband was able to work from home at times to fill the gaps just to make sure somebody was nearby. It wasn't just that we had the nurse, but we had such a huge turnover. We didn't have consistency. By the time that we had trained somebody on Xiomara, making sure that they understood her needs, sometimes then they would leave. Or we would realize that they weren't up to task and we would have to let them go. So, it took a really long time to get to the point where we had somebody who knew her.

Xiomara requires nursing care, but Elena has had trouble finding reliable caregivers.

The very first [time we called 911] was shortly after Xiomara came home. We were home for maybe two or three days. We just could not maintain her oxygen saturation (the level of oxygen in her blood), and she was struggling. We did all the things that we were trained to do, which was: give her additional oxygen, give her breaths using the Ambu bag, change out the trach in case there was a plug, give her additional nebulizers.

When we called 911, and we certainly called 911 multiple times, it took 10 minutes for EMTs to arrive at the home. A lot can happen in 10 minutes when you have a medically fragile child. Then when the EMTs did arrive, as wonderful, amazing as they were, they were also not quite trained on babies with tracheotomies. So really their assistance was transportation to the hospital, and not necessarily critical life-saving measures. So, if we had a nurse who couldn't handle an emergency, and we certainly came very close several times, there was no way that I could leave.

I think having a community was really the lifesaver. I had certainly had a very supportive and close-knit circle of friends that was there for us when Xiomara was in the NICU. As well-intentioned as they were, there were many times where it was not helpful. A lot of comments they would say were not helpful, because they didn’t experience it. [I needed to] surround myself with families who had extended hospitalizations, who had been through similar experiences of having witnessed your child be on the brink of life and death. Who've had the experience of receiving one diagnosis after the other, the uncertainty of all of those diagnoses. And [in that community] we didn't talk about expressing [it] in terms of PTSD. I think it was just unspoken. It was it was very clear that we all have that unique experiences of 911 and riding in an ambulance and holding on to our babies and the uncertainty and fear of all of that. So that sense of community is really at the core and foundation of Little Lobbyists.

Elena has build a community of other parents who understand the experience of "riding in an ambulance and holding on to our babies."

In that community, the focus shifted [in 2017]. Instead of being there for one another in terms of provider referrals and to have to someone to talk to 2 o'clock in the morning, the focus was on healthcare advocacy and responding to the threats against our children's health care. At the core of the community are families who understand what it's like to have a child with complex medical needs.

We saw the House vote for repeal [of Obamacare] in May, very specifically threatening coverage for people with pre-existing conditions. Our children all have pre-existing conditions. All of the families that we talked to that have extended hospitalizations can tell you how much the hospital bills were, how they reached the lifetime limit within three months, four months, five months, a year, and were climbing. There were real concerns that affect their families: Will our insurance no longer cover my child because she has pre-existing conditions? Or what if needed to get new health insurance? Will the new insurance cover these pre existing conditions? Will the ban on lifetime limits remain? What if we have new insurance? When does it kick in? and we've already reached lifetime limit? does that mean that that the clock start over? So, that was a threat on a whole different level that we needed to fight.

When we were in the hospital, I was 100 percent constantly aware of my privilege, of my education, of my flexible schedule, and being able to advocate for Xiomara in the hospital setting and get everything that she needed. I was able to be there.

Xiomara has a feeding tube and is on a tracheotomy and ventilator.

Now, things with Xiomara have gotten easier, not easy, but easier. She's able to do a lot of things that we did not think possible. So it has been quite a source of relief, gratitude and joy, but I don't allow us to get complacent to that. She still needs a very high level of medical care. She still has a trach. She still uses a ventilator. She's still relies on her feeding tube for all of her nutrition. The trach, if it comes out, we know we have two seconds. So, it's still very much a life and death matter. I think we've just gotten a bit more comfortable; we’ve gotten more confident. She's been able to communicate more. So, there are some changes but the actual reality of medical care has not changed.

I realized that I hadn't been paying as much attention to my son as I had wanted. I hadn't been paying attention to my marriage the way that I should have.

When Xiomara was a bit more stable and progressing, we were able to breathe a bit. Then that's when I sort of realized: oh this has been really really tough. It is like when you realize you've been holding your breath. I realized that I hadn't been paying as much attention to my son as I had wanted. I hadn't been paying attention to my marriage the way that I should have. I hadn't been keeping up with my friends. So, all of these other thing that had been neglected while I was focusing on Xiomara sort of came to the surface. It was like: now I have to deal with all of these other things that I had not been taking care of.

Elena and her husband have attended couples counseling, and have discussed the symptoms PTSD between themselves.

It is sort of a side trauma. I had sort to work through that, having these difficult conversations just my husband, for example, recognizing that we had just sort of poured ourselves into Xiomara, and we’d not really spend a lot of focus working on our marriage and taking care of each other. And that we had handled a lot of things differently and needed different things from the experience.

There's just no way to un-see your child coding. There's no way to unfeel that moment.

So my husband and I did do couples counseling for a bit. That was certainly helpful. We stopped just because of scheduling and logistics. I think that we recognize that it was something that we had to do, and I think seeking more care when our schedules allow is definitely something that in our plan. Which is hard to say. I’d like to prioritize it. We should make the time for it, but we're still sort of balancing a lot.

[In counseling,] we definitely talked about [PTSD]. We didn't zero in on it, I think it was more like it was obvious. It was acknowledged like, yes, of course this all was a traumatic experience, that I was dealing with the aftermath of that and had many symptoms of PTSD.

Like other parents of medically complex children, Elena worries about the repeal of Obamacare and lack of coverage for children with pre-existing conditions.

The home nursing conversation is still very, very difficult. When we talk about new experiences for Xiomara, when we have to leave her and the care of others it is very difficult. Last year, she went to school for the first time, to pre-K 3. She needed a nurse to go with her and so we had to talk about it: Will she be able to go to school? Because if she goes to school, that means that we have to trust somebody to care for her — I think [that] whenever there's a new experience that's in any way a reminder of that time; we question, can we leave her, can she do this?

Or when we talk to new doctors and build a relationship with somebody new to care for her, that's really difficult. It [brings up] trust issues. You know our nursing agency, for example, sent us nurses who they told us we're 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.

I think trauma is just something we carry with us. It is hard for me to say because you know Xiomara is 4, so I feel like this happened not that long ago. There's just no way to un-see your child coding. There's no way to unfeel that moment. And so it is something that I think parents like me just carry with us, always.

This interview has been edited for length and clarity.

Photography: Juliette Fradin

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.