My husband and I were three years into an adoption process when we decided to take up our city’s offer of free training to become licensed Emergency Medical Technicians (EMTs). It was a way to fill our time and empty hearts while we continued to wait for the child it seemed like was never going to come.
Becoming an EMT was terrifying, exciting, and all consuming, so it was the perfect distraction from simply enduring the ever-increasing wait times that were evolving for international adoption from China in 2008. Little did we know how critical this training was going to be for us as well as our future daughter.
We passed our practical exams right around the same time we said yes to bringing home a beautiful little girl from the other side of the world.
We never set out to be parents of a child with special needs. None of us do. The heart does not always listen to the brain, however. It was love at first sight when we saw a picture of a tiny elfin little girl with a smile bigger than her face and a mischievous twinkle in her eye. Our hearts said, “It doesn’t matter what her medical needs are, we can handle it because we already love her.”
Our first year home with Lily was pretty uneventful. She spent most of her time eating, sleeping, and growing. This all changed on a beautiful July morning, on a long walk with a friend, when Lily started screaming. Inconsolable, full body, gut-wrenching screaming like nothing I had ever heard her do before. She had screamed herself into exhaustion and fell asleep just as we got back to our house. That was when I noticed the twitching and my heart stopped. The rhythmic “tick, tick, tick,” of her left arm, the drool running down her cheek. I knew from my training and experience she was having a seizure. I yelled for my husband to call 911 and we headed for the ambulance bay that happened to be just next door.
EMS training is filled to overflowing with acronyms. EVERYTHING has an acronym, and one of the very first ones they pounded into our heads was “remember your ABCs.” Airway, Breathing, and Circulation. This is going to tell you immediately how critical the situation is.
I can tell you that in those first frenzied moments when Lily started seizing I had no idea if she was breathing or not. She was twitching so much that I couldn’t tell if her chest was moving air. All I could think was, “Please God, don’t make me have to do CPR on my own daughter.” Thankfully our fellow EMTs showed up for the call within minutes of us calling 911 and took over for this shell shocked and frantic mother.
No matter how well-trained or knowledgeable you are, seeing your child in medical distress can knock you down flat. And I was definitely traumatized that day. But I had complete confidence in knowing how to use and access emergency services. I am part of the emergency services system. When my husband called 911 he knew the dispatcher answering the phone. We personally knew the EMTs and police officers who would be responding to the call. We knew exactly which hospital we were going to be heading for and exactly how long it would take to get there. We were already preparing in our minds for the fact that we might need to arrange a paramedic intercept if our daughter didn’t improve quickly.
We didn’t know what the exact outcome of this situation was going to be for our daughter, but we had complete confidence that we were doing everything we could possibly do to make sure she had the very best chance at a positive outcome.
If you are reading this, it probably means you have been or could potentially be in a similar situation with your child who has medical needs, and thoughts of it keep you awake at night. I want to give you a little bit of insight and some tips from inside the Emergency Services that might help you sleep a just a little bit better.
Learn as much as you possibly can about your child’s potential medical emergencies. If your child has special equipment like inhalers, a ventilator, or suction devices, know how to use them and troubleshoot them. Remember that the EMTs responding to a call may not be familiar with specialized equipment so you will be the expert there to help them.
Keep lists of medications in easy-to-access places. Know what side effects of medications can be and what to watch for. Make sure any emergency medications are stored properly, not expired, and accessible in the event of an emergency.
Make a plan.
Just like you make an escape route plan in case of a fire, you make an emergency response plan in case of a medical emergency. In our case of a seizure disorder, after our first seizure we grilled the doctors on what to do if she had another one (which she promptly did two weeks later). Do we call 911? Does she need emergency meds? Which hospital do we go to? Does she need to go by ambulance?
Do a practice run.
Go through all of the steps like you would in real life (don’t actually call 911 though). Doing a family emergency drill might reveal where you are missing information, equipment, access to medications, or your list of medications. Make sure you have things like your address and phone number posted at a central location so if someone else is placing the 911 call for you, they have all of the information that dispatch will need to get help to you. And in an emergency, it is not a rare thing to forget what your own address is.
Do a meet and greet with your local EMS service.
If you have a child with complex medical needs I cannot recommend this enough. Now, every EMS service is going to be different and have their own way of doing things. I can only speak for the service I am affiliated with, but we encourage families with children who have medical needs to reach out to us. If it is appropriate, we even have the family come to a monthly meeting for an official meet and greet, and to let the child or parents explain the medical condition and special needs. This helps us as an agency be better prepared for an emergency call for this individual, and it also allows the child to become familiar with the people who may be responding. Rather than a crowd of strangers rushing in with all kinds of scary equipment, there is instead a familiarity that these people are here to help. We love doing tours of our station and helping children gain understanding and exposure to the ambulance and equipment we carry.
Your local EMS service is also going to be able to help you with your emergency plan by explaining the process of what happens when you call 911. In our city we have a volunteer EMS service. Once a 911 call is placed, a page goes out for the on call EMTs to respond to an address for a certain medical need. Our EMTs respond to the station in their own vehicles, get the ambulance, and head to the scene. We shoot for a response time of 7 minutes or less. While we are in the process of responding, there is a police officer responding immediately to the scene. Our officers carry a basic first aid kit and defibrillator, and are usually on scene within a couple of minutes. (We are a small town; I realize this type of rapid response may not happen in a large city). The police officer will update us by radio of pertinent information. Dispatch will typically stay on the phone with you until the police car or ambulance arrives. They will also be able to coach you in basic first aid. In larger cities the fire department may be dispatched in conjunction with the EMS. Just another good reason to make some contacts to find out if you should expect to see one ambulance and a squad car in front of your house, or if you are going to be seeing some fire trucks, too. If you know these things ahead of time it can make the whole event much less traumatizing and overwhelming.
Sign up for your EMS service/county system of identifying complex medical needs.
In our county we have a system in place where families/individuals with complex medical needs can fill out a medical information card so that if a 911 call comes in from that address, that medical information pops up immediately for dispatch to see. That information is then conveyed directly to the responding EMS team. The more information we have going into a call, the better we are able to do our jobs when we get on scene.
Ask for and seek out specialized training.
Your local EMS service is probably going to be able to offer you, at the very least, basic first aid and CPR training. Ask them if they are willing to do more specialized training for how to respond for things like seizures, or any other issue your child might face. They may or may not be willing to provide that type of training. If they don’t, they may be able to give you information on where you can get some specialized training.
If you do have to call 911, do whatever you can to remain as calm as possible in that moment.
You are your child’s lifeline. When a child has complex medical needs, the parent is often the expert. As EMTs we will be looking to you for important information that may be critical in saving your child’s life. There will be time to fall apart later.
After an emergency event, take time to debrief.
This is when you can fall apart. Be kind to yourself after an emergency event. Even when there is an amazing, positive outcome, your body has gone through a roller coaster of chemical upheaval. There are consequences when your body dumps a massive amount of adrenaline into your system. It may not hit you until days or weeks later, or until something seemingly benign triggers you. Secondary PTSD is only beginning to become a more familiar and recognized condition among caregivers of children who are medically complex, but I can personally attest to the reality of it. Find someone to talk to about your emergency event. Debriefing is a common practice in the EMS/fire/police world when there is a particularly difficult call, and they are professionals. If debriefing is important for the professionals, it is that much more important for you.
Always Call 911
In summary, never, ever be afraid to call 911. Just because you call 911 and the ambulance and EMTs come does not mean you are obligated to take an ambulance ride. We would rather you call us to come for a possible emergency only to find out your child is OK, than for you to call us when it is too late. We will happily turn around and go home if your child turns out to be OK and not need emergency intervention.
Medical emergencies with our children are some of the scariest things most of us will ever face, and some of us will face them on a regular, ongoing basis. But this isn’t something you have to do alone, and there are a multitude of things you can now do to help take the level of stress down a notch. Sometimes just understanding the process of how to get the help you need is enough to let you sleep a little easier at night.
I’m a pro at dealing with seizures now. I still don’t always sleep the best, but at least I know exactly what I need to do, who I need to call, and when I need to do it. I also know that the people responding to my call want nothing but the very best outcome for my daughter, and that gives me a tremendous amount of peace and reassurance.