What mothers can do when nightmare becomes reality
Kate Bowen: My daughter Georgia was born in cardiac arrest. She spent her first four months on life support but it felt more like four years. While I wish no parent has to experience the utter devastation, crippling anxiety and overwhelming helplessness that come with having a critically ill child, I want to share the strength I found as Georgia’s advocate during the darkest days of my life.
Dr. Christina Vander Pluym, MD: I wear many “hats” in my multiple roles at Boston Children’s Hospital, but as the Medical Director of the Ventricular Assist Device Program, Stroke Center and Cardiac Anti-thrombosis Management Program, I am called in to treat the sickest children admitted to our hospital. Georgia’s situation was so dire when she first arrived, few believed she would even survive long enough to meet me. And yet here she is today - a thriving bundle of joy. Throughout their journey together, I’ve watched Kate’s unwavering belief in her daughter become the shining example of what can happen when you combine the power of hope with the willingness to challenge the status quo.
CV: Unfortunately, the notion of “Patient Advocacy” can be a loaded term in healthcare. Many people conflate patient advocacy with an aggressive parent or difficult family. I want to be clear: there is no such thing as a “difficult family” when you’re talking about people being thrown into the war zone that is a hospital. Previously, the assumed role of the doctor was to make a determination on care, tell the patient how things were going to go and the patient would blindly follow that pathway. But because there is so much more information available today, that patient-doctor relationship can - and should - be more of a partnership.
KB: The thing I want every parent of a critically ill child to understand is that YOU are your child’s best and most important advocate. The doctors and nurses at Boston Children’s Hospital are the best in the world at what they do and their unwavering dedication to saving my daughter’s life is something I will never be able to put into words. But the reality is, doctors and nurses go home. They have other patients to care for and other crises they’re facing. You are truly the only one thinking about your child’s life 24 hours a day. To me, patient advocacy is about taking every ounce of that despair and helplessness you feel and using it as fuel to become laser focused on the things you can actually impact.
CV: Sometimes even the best doctors and nurses take for granted that being in a hospital is a foreign experience for most people. The beeping, the weird smells, people constantly coming in and out of the room; it’s hard to know where to sit or stand, let alone how you fit into the overall picture. So while healthcare providers should be making sure the patient and family feel informed and empowered to communicate, the moment you feel like you are not getting the information or support you need, ask for it. Keep asking for it. There are no dumb questions when you’re talking about life and death. Don’t be afraid to ask a doctor or nurse to re-explain something or have them draw a picture for you.
KB: You are not in the hospital to make friends, you are there to save your child’s life. I know that sounds harsh but sometimes it’s easy to get caught up in this desire to not be viewed as the overbearing mom or pushy parent. The result is that we stay quiet in the moment our child desperately needs us to speak up. Don’t worry about being a pain in the neck. No one knows your baby better than you, so have confidence in that and trust your gut if something doesn’t feel right. When an alarm went off I wouldn’t settle for “don’t worry, that’s nothing.” I wanted to know as much as I possibly could at every turn. To me, it was never going to be good enough that I was participating in Georgia’s care, I wanted to improve it.
No one knows your baby better than you, so have confidence in that and trust your gut if something doesn’t feel right.
CV: Whether it’s a particular nurse, the hospital chaplain, or even another patient’s family member, finding someone in the hospital you are comfortable expressing your hopes and fears to is critical during a time that often can feel completely isolating. While social media and online platform scan create communities, be wary that it may not be representative of the whole picture and can bias towards “the worst experience”. There are many other people who may have common journeys, with different outcomes. Those parents may have endured similar challenges, but are now busy driving their children to baseball or ballet, and as such their voice is not represented in the online world.
KB: The flip side of this is to be honest with yourself and your healthcare providers about who you don’t feel supported by. If there’s a nurse or caregiver who you believe is not the right fit for your family, that’s OK. Have the confidence to tell your doctor or the nursing supervisor when your family needs something or someone else.
CV: It’s easy to be overwhelmed by all the information and it’s nearly impossible for our brains to clearly remember everything when we’re in a heightened emotional state, not to mention sleep-deprived. List out the top three or four questions you have for the care team each day and be sure to write down the answers. I tell my patients to keep a daily journal that helps track good days and bad days. It allows the care team to understand and recreate even the smallest things that can make an entire day feel like a success.
KB: At the time, I did not understand why Dr. Vander Pluym pushed us to get a family photo shoot when we were in the hospital with Georgia. In the midst of the chaos it just didn’t feel like an important use of anyone’s time or energy. But she and the nurses kept gently nudging us to do it, so eventually I booked a photographer to come to the hospital. I’ll never forget - after weeks of despair - the happiness I felt on the rooftop of the hospital having our picture taken as a family of six for the first time. The reality was that might have been our only picture as a family of six. Dr. Vander Pluym of course knew that, but she also understood why something seemingly unrelated to Georgia’s health would actually become one of the most important moments and treasured memories for our family.
CV: Oftentimes the worst thing that can happen in the hospital is not death itself, but rather how death happens and the way the entire experience is viewed. We tend to focus so much on the destination and not enough on all the little moments along the way. You can spend those fleeting moments feeling horrible for yourself and your child, or you can take those moments and try to extract every ounce of joy possible from them. Something as simple as getting dressed up to take a picture with your child, or taking time to make sure every parent knows they can help dress or feed their baby can be just as important as making sure we as doctors are giving the right dose of medicine. We need to prioritize those quality of life moments just as much as every life saving measure we take in the hospital. In the end, if all a mother is left with is the knowledge she got to hold her baby, that may end up being the most important memory she will have.
CV: This is often the hardest piece of advice for people to take to heart. When your child is in critical care, the guilt can be overwhelming. I see parents wishing they could take the burden off their child so much that they become martyrs and start to punish themselves by not eating or sleeping or even going to the bathroom. I’m here to tell you that your child needs you to be at your best. Babies are so intuitive they will feed off whatever energy is in the room. The stronger and more resilient you are, the stronger and more resilient your child will be. Never forget this is an endurance race.
KB: Being the best possible advocate for your child requires a deep self awareness and understanding that sometimes the most powerful thing you can do is step away. There were times when I was in such a wreck in the hospital that I realized I needed to leave the room for Georgia’s sake as much as my own. The more the doctors and nurses have to focus on taking care of you, the less time and energy they will have to focus on saving your child’s life.
CV: Unfortunately when it comes to patient advocacy, there is no ‘one size fits all’ handbook. There is no airtight set of rules to follow that can guarantee a critically ill child will get to go home with their family. But no parent should ever be left feeling like they could have done more to save their child’s life. It is on us as healthcare providers to ensure that never happens. It must be our priority to educate families instead of dictating how the care will unfold. From the moment they arrive at a hospital, it is critical we are all on the same team, working toward the same goal. We must arm loved ones with the information of every possible outcome, empower parents to have a voice, to make sure they understand their role in the decisions being made, and to feel comfortable communicating with us at every turn. If our healthcare systems can consistently commit to that type of doctor-patient partnership, we will have many more beautiful stories - like Georgia’s - to share.
Kate Bowen is the CEO of GCB Medical and a mother of four. Her youngest child, Georgia, was born in cardiac arrest in 2018. After surviving a stroke and receiving a heart transplant at four months old, Georgia is thriving as she continues to redefine what’s possible for cardiac pediatric patients.
Dr. Christina Vander Pluym, MD is the Medical Director of the Ventricular Assist Device Program, the Cardiac Antithrombosis Management and Monitoring Program and co-Director of the Stroke Center at Boston Children’s Hospital. She helped save Georgia’s life and is now leading the GCB IMPACT Initiative that focuses on cutting edge pediatric cardiac research and care at Boston Children’s Hospital.