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.
Meghan Shuttleworth lives in Dagus Mines, Pennsylvania, with her daughter, Fiona, and her parents. Fiona was born 10 weeks early with omphalocele, a condition where a baby’s abdominal wall does not completely close, and their organs protrude out into the umbilical cord. Fiona came home after a 4-month Neonatal Intensive Care Unit (NICU) stay, with a tracheostomy and a ventilator. Meghan talked with me about almost giving birth in a helicopter, the 911 calls she’s had to make while working to save her daughter’s life by giving chest compressions, and the nightmares that keep her awake at night. This is her story, as told to Hillary Savoie.
We found out when I was 13 weeks pregnant that there was something wrong. A few weeks later, we found out that she had a condition called omphalocele: our baby would be born with her organs outside of her body. We were given the option multiple times to terminate the pregnancy. We were actually advised by one of the doctors in Pittsburg to terminate.
The only thing that I have ever wanted was to be a mom. And we tried for like a year and a half. So, to be pregnant, and then find out that there's something wrong, something so wrong that the doctors think that you should terminate, I kind of lost it, but we knew that that wasn't an option either. I just knew that that's not what I was going to do. I knew that I was going to carry her for as long as I could carry her. And we would see what happened.
Fiona ended up being born early. She was born at 30 weeks and three days with what they consider a giant omphalocele — they put them in categories based on what organs are outside of the body. Hers included her small intestine, stomach, spleen, gallbladder and part of her appendix. So, even though we knew that was going to be a complication, her being born 10 weeks premature added more complications to everything. She only weighed 3 pounds when she was born. A lot of times they will try to do surgery right after the baby's born if they can, but she was so tiny and she had so many organs outside that there was no possible way to do surgery.
Since I live in the middle of nowhere, I was seeing a doctor locally [during my pregnancy]. But, ultimately, I was going to have to deliver in Pittsburgh because this is something they don't see often where I am from. However, my water broke, so I went into labor so early. And I ended up having to be life-flighted while I was in labor to the hospital in Pittsburgh.
I almost had her in the helicopter. They had doctors and nurses waiting on the helipad when we landed. Then they rushed me in for an emergency c-section. They told me that from the time they made the incision to the time they had her out of me was one minute. I was there completely by myself because my husband at the time — now my ex-husband — was still at home. My entire family was still at home. No one at home even knew that I had her at that point.
Being told that your child has two weeks to live, after you’ve been through the trauma of almost having her in a helicopter, is seriously crazy.
I saw Fiona for maybe 30 seconds before they wheeled her out and they took her to the NICU. And then they ended up transferring her from that NICU to [UPMC] Children's Hospital [of Pittsburgh]. And I didn't get to see her until the next day. They let me leave the hospital early. Most of the time when you have a c-section, you're there for 48 hours. I was there for less than 24 because they let me out to go see her, because they didn't think about she was going to survive.
When we got to Children’s, and I talked to the neonatologist there, they gave her two weeks to live. They told me they had never seen such a huge omphalocele on such a tiny baby. So being told that your child has two weeks to live, after you’ve been through the trauma of almost having her in a helicopter, is seriously crazy.
I wasn't even allowed to touch her. She was so tiny and so fragile. She was in an isolette. At that point, she was not breathing on her own, so she was on a ventilator. She also had jaundice, so she was under the bilirubin lights.
So, being a new mom is hard, anyway. And then to walk in and see your baby that was taken from you, that you haven't seen in 24 hours, to see her laying there in an isolette on a ventilator, under the lights and then to be told that you're not allowed to even touch her. I wasn't even quite sure what to do. I just stood there I stood there for a really long time and just stared her because I didn't know what else to do. There was nothing else for me to do. I stood there, and I talked to her. And then I cried.
The NICU part of it is somewhat of a blur because it all happened so fast, even though we were there for so long. There are certain things that I can kind of remember but it all kind of lumped together because it was just like it was just a blur. I ended up having to quit my job, and, luckily, her dad could take a layoff. We lived in Pittsburgh for the almost four months that she was in the NICU.
It is really, really hard to form a bond with your baby when you're not even allowed to hold her.
The nice thing about Pittsburg hospital is that the Ronald McDonald House is attached right to the hospital. So we stayed there. Our routine was to sit in her hospital room and stare at her. And then we’d go eat, and then we'd come back into her room. Then we'll go eat dinner, and then come sit in her room. And then we would go the bed. And do it all over the next day.
Eventually they let me touch her. I might have gotten to change your diaper, if I asked them. Or patted her back or rubbed her head but just for a minute. She was still in the isolette because she couldn't regulate [her] body temperature. So I could stick my hand in there for a minute, and then I’d have to close the door. It is really, really hard to form a bond with your baby when you're not even allowed to hold her.
When she was a month old, she was able to regulate her body temperature, I got to hold her. She was still on a ventilator. So, there was all the tubes and wires and everything. And they actually timed me. They put her in my arms. And they timed me, for two minutes. I was allowed to hold my baby for the first time for two minutes.
I couldn't believe that this was my baby. And I also remember thinking: What if I do something wrong? What if I touch something? What if her tube comes out? Like those aren’t the things you should be thinking when are holding your baby [for the first time]. You should be able to sit there and relax and be in the moment. And that’s not how it is when your baby’s in the NICU. You're constantly wondering what if something happens? What if I’m the reason something happens?
We just fought, and she fought, every single day. And we didn't give up. The biggest thing came when it was time for us to decide if we were going to give her a tracheostomy (a surgical opening created in the windpipe in order to allow access to the trachea). We were given the option of giving her the trach or basically making her comfortable until she died. Her dad and I just kind of looked at each other: How could you not do everything you possibly could to help your baby survive?
She was in the NICU for 110 days. And she came home with a trach and with her organs still outside of her body.
The first time we had to call 911, we had been home about a month. I woke up to her dad banging on the bedroom wall. What had happened is that while she was sleeping, her vent tubing was up over top of the crib railing. And when he went to pick her up the water that had accumulated in the tubing dumped down into her trach.
So, I was still kind of half asleep. He handed her to me, and he called 911. So I was holding her while trying to [change her trach]. And everything's still beeping around me. The ventilator was off her trach at that point so, the ventilator's beeping. The pulse ox (pulse oximeter, which measures the oxygen in her blood) is beeping. And the numbers are falling so fast. And I remember looking at it and her oxygen was at 6 percent. And I looked at her and I thought at that point she was gone. She was grey. She was not doing anything. I mean her oxygen is supposed to be close to 100 percent. It was at 6 percent.
The 911 lady is trying to get answers from us while we are trying to save Fiona’s life. We changed her trach, we didn't even like redo the trach ties. So I'm trying to hold her trach in, and bag her with the oxygen at the same time, while he's trying to tell the 911 lady where we live. After that, I don't even know how long it took, but eventually, her numbers started coming back up and I could see that her color was getting better. And that was before the paramedics even got there.
We had her breathing again, before anyone got to our house. When they did get to our house, they didn't know what they were doing. Which is also one big thing that scares me: the right people are not trained to deal with situations like that. We knew what we were doing more than they did. And they actually told us that we had the situation under control. And they didn't take her to the hospital.
The next two times the same thing happened, and we're not exactly sure what that thing even was: But she was just laying in her crib. And she made this weird noise. And all of a sudden just stopped breathing and turn blue. One of those times her nurse was there. So her nurse and her dad were changing her trach and bagging her while I was doing chest compressions.
And that is one of the big things that still gets me: that I had to do chest compressions on my own child.
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.
[As a result of my PTSD], I don’t sleep much, a total of four or five hours a night, and I'm usually up like every hour, every two hours. Nightmares are part of the reason that I don't sleep. I have a lot of them where something is chasing me. But I can't see what it is. I have a lot them where I am trying to scream but I can't. Or I'm trying to get someone's attention, and I can't; people don't see me. And I have a lot of times where something is happening to someone. And I can't get to them.
I have PTSD, but it’s not something that people even know I have.
I've also have a lot of them were whatever was happening to Fiona was happening to me. I will I will have nightmares that I had a trach all the time and then I couldn't breathe. That was a rough one. When you have a nightmare like that, and you wake up, it's really hard to fall asleep.
I have certain triggers that that I know of, like, hearing the helicopter, for example, hearing the life flight still sends me into a panic because not only was I life flighted while I was in labor, Fiona was life flighted twice after that. So hearing that helicopter automatically gives me anxiety. Fiona came home on a ventilator and with an NG tube, so she was on feeding machine, a feeding pump, so any kind of beeping noise like that gives me anxiety.
[When it happens], it depends what the trigger was and how bad it was, but I basically I just won’t talk to anyone. I'll go sit by myself. Sometimes I'll cry. Sometimes I will get shaky, sweaty, and thoughts just race through my head. It's something that it's really hard to explain, unless you've experienced it.
It's definitely affected most of my relationships with other people. I don't really have any close friends anymore. I used to be a very outgoing person, and would talk to anyone. I could have a conversation with anyone. And now I can't do that. I feel like I have a really hard time with small talk. I don't want to talk to you about the weather. I have way more important things to think about right now. I don't want to be around people.
At the same time, [the PTSD] made me realize that you have to celebrate the little things because, you know, I was at the point where I didn't know if she was going to survive. And I didn't know if we would ever make it to a milestone. So, we celebrated every tiny little thing there was celebrate. And in that respect, I think it was a good thing. You know, it made me made me focus more on what's important.
I have PTSD, but it’s not something that people even know I have, because there's still such a stigma about it. And it's something that people don't talk about. And most people think that PTSD is something that only soldiers have that have been in combat. So when you do tell someone that you have PTSD [they] kind of look at you like what you weren’t in Iraq, what’s wrong with you?
It make me really sad that people are so judgmental, and that people can't even fathom the fact that there are other things that are so traumatic in someone's life that could cause that. I mean, I saw my baby blue beyond blue. I mean, she was gray and lifeless. And I was holding her in my arms. That's not an image that you can ever get out of your head.
This interview has been edited for length and clarity.
Photography: Rachel Kunzen
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.