The Pediatric Congenital Heart Association firmly believes that patient-engaged care leads to improved patient experience and outcomes. In this tragic story, one family believes that they did not have the information needed to properly understand the expectations for their child. We encourage patients and providers to work closely together to find a balance between hope and expectations to maximize the experience. While recommendations that follow are the opinion of this family, we do believe they should be included as part of a broader discussion.
Our daughter Sadie was diagnosed with Tetralogy of Fallot (TOF) in July of 2014 shortly after our 20 week ultrasound. We were not only shocked and terrified, but we also could not find anyone we knew to talk about this with. Congenital heart defects (CHDs) were a mystery to our friends and family. Even our OB had limited information regarding Sadie’s diagnosis. We immediately began researching to find out as much as we could about Sadie’s condition, including potential surgical options, outcomes, potential complications and information regarding quality of life. We quickly learned what most parents with children with CHDs already knew – that this information is not only widely unavailable, but extremely difficult to understand.
My husband and I considered our family fortunate to live close to a reputable children’s hospital with a high-ranking pediatric heart center. We also felt lucky that Sadie’s defect was diagnosed early – it would give our doctors several months to prepare us to care for a child with a CHD. We assumed our doctors would empower us with all the information we needed to become an integral part of Sadie’s care team. We now feel those assumptions were incorrect and that we were ill-prepared to effectively care for our daughter.
Before Sadie was born we had multiple appointments with Sadie’s care team, including multiple cardiologists and support providers. Every doctor we met with was extremely optimistic regarding prognosis, surgical outcome and quality of life. The two-stage repair was explained as well as long-term outcomes that included decreasing frequency of follow-up appointments with the expectation of a third surgery in her teen years. Over the course of these appointments, our doctors focused on making sure we understood the anatomy and physiology of Sadie’s defect, how she would be cared for in the hospital after she was born, and the specifics of her surgery. Although we were upfront about wanting as much information as possible so that we could be prepared for every scenario; there was little discussion regarding risks, complications or adverse outcomes. We were told with great confidence that Sadie would have an excellent quality of life, equal to or at least extremely close to that of a non-CHD child.
However, every step of the way there were unexpected findings. A week before delivery Sadie was diagnosed with pulmonary atresia (a more severe form of TOF). Only after her death were we told that this significantly increased her mortality rate. Then, the evening before her surgery, we were presented with a new surgical strategy that we were hearing about for the first time.
We felt we could not effectively take part in the decision making process regarding our daughter’s care when we were being presented with new information on an as needed basis. Putting us at an even bigger disadvantage was the fact that we were trying to understand and process this new information at an extremely emotionally charged time.
Shortly after her discharge home, we took Sadie to the ER. She was experiencing several complications from her condition and was admitted back into the cardiac care unit. Most of these complications had not been previously discussed with us as possible outcomes yet were quickly dismissed with phrases like “these things sometimes happen” and “this isn’t abnormal to see in a child with her condition.” These responses made us increasingly anxious, fearful and confused. As the disconnect between what we had been prepared for and what was happening grew during this second hospital stay, we increasingly felt that our doctors hadn’t been truthful with us regarding Sadie’s condition, and, in turn, had not realistically prepared us to care for our daughter. We began to question our doctors, Sadie’s future, and our own ability to care for our daughter. Less than two days after she was discharged, Sadie suddenly stopped breathing at home and died at the nearby hospital.
We learned a lot during our 23 days with Sadie. We will never dispute that our doctors only wanted the best possible outcome for our daughter. We are grateful that people with their knowledge and skill exist to give children like Sadie a chance at the best possible life. But there are many areas where our doctors and medical team could have done a better job to ensure Sadie got the best possible care.
We depended on our doctors to prepare us for ALL realistic outcomes. Overstating the positives and understating the potential risks and complications robbed us of our ability to make informed decisions regarding our daughter’s care. Perhaps our doctors were trying to protect us by omitting scary and complicated outcomes or to shield an expectant mother of a sick child from what they perceive as unnecessary stress. I don’t know. What I do know is that the lack of information made us feel like helpless bystanders instead of informed parents who were part of a team of people making decisions together in the best interest of a sick child.
Our lives will never be the same after experiencing Sadie’s life and death. We can never go back to re-advocate for our daughter and we will never be able to change the outcome. We have spent a lot of time replaying the events of Sadie’s life and death. In doing so, we have been able to identify several things that we wish our doctors had considered, as we would have been better prepared to care and advocate for our daughter.
Timing of information sharing. Parents deserve as much information as possible as soon as possible for several reasons.
- Start building trust between doctors and parents through honesty and transparency.
- Providing comprehensive information early and often allows families to absorb different information over time as stress levels go up and down.
- Parents need the full spectrum of information to be able to plan and prepare to care for a child with a CHD.
What information to share. It would be helpful for medical teams to come up with standard information for each diagnosis to share with parents. Such as:
- Hospital outcome data that includes number of patients, surgical cases, and both surgical and long-term mortality rates.
- Benefits, risks and recovery (in and out of the hospital) for each planned surgery, as well as unplanned but possible alternate surgeries.
- Additional treatment approaches necessary including common medications and their side effects.
- Potential complications that children with this defect may experience.
- Possible associated disorders.
- Long-term outcomes and challenges children with this defect may face such as physical or neurological challenges.
- The full spectrum of what caring for a child with this defect looks like, not only during the hospital stay, but at home and on a long-term basis.
How to effectively communicate information. Given the complexity of the information, how it is communicated is just as important as when and what. The more resources and open lines of communication that parents have, the more supported and connected they will feel.
- Find the balance between benefit and risk, between optimism that all will go according to plan and concern regarding complications that may arise.
- Use multiple modalities – verbal, video, images and writing. A written reference can be very helpful and could eliminate miscommunication and provide clarification for parents.
- If possible, it would be helpful for medical teams to assign one point of contact to make sure all the agreed-upon standard information has been communicated to parents, especially when one specific doctor is not assigned. At the very least, doctors should let parents know who to follow up with and how to reach them should they have questions or concerns at any time.
We wanted, expected and deserved to be presented with all the information needed to be able to advocate for our child. Many complications and outcomes may be out of the doctor’s control, but providing parents with ALL the relevant information at the earliest possible time is well within it.
Erin Schuster is the mother of three little ones, two sons and one daughter. Her daughter, Sadie, was born with multiple congenital heart defects and died from complications from her defects at 23 days old. Since Sadie’s death, Erin has been working to raise CHD awareness and funding for CHD research. She is also interested in raising awareness and educating others regarding infant loss and the life-long grief journey experienced by bereaved parents. Erin strongly believes in the Pediatric Congenital Heart Association’s goal to empower CHD parents with the information necessary to become effective advocates for their children. For more about Sadie’s story, please visit www.rememberingsadie.org