NOTE: Daniel and Kelly speak to this question on Episode #2 of The Abel Speaks Podcast. You can listen on Apple, Spotify, or your app of choice.
How does Abel Speaks process and approach medical interventions with families?
We would start with the big disclaimer that we are not, nor do we pretend to be, doctors or medical providers. We are writing as parents who have had to personally process these things and have had the honor of walking alongside over 100 other parents who have had to do the same.
Furthermore, we want to acknowledge that this can be a loaded topic. People have a lot of emotions and feelings surrounding medical interventions, and what should and shouldn’t be done after a baby is born. We couldn’t hope to fully flesh this out in a short post like this, however, we wanted to introduce the topic on the 2nd episode of our podcast because of how frequently it comes up when we connect with a new family. The question sounds something like, “How in the world do I prepare to make these decisions for my child when I feel so ill-equipped?”
There’s this spectrum of choices. We can choose not to intervene, we can choose to do every intervention possible that’s offered for our baby, and there’s all the options in between. As an organization, we really try to take a non-biased approach to questions about medical interventions. The reason for that is because we truly believe that the Lord has entrusted every baby to specific parents, and as those parents begin to educate themselves on their potential options and approaches, God can and does equip those parents to make the best right decision for their child.
We’ve seen this be true for parents who have landed all across that spectrum in their approaches, as different families make different choices because their baby’s needs are different. We’ve seen families take every route imaginable, and we’ve seen that be good and right for their family.
How did we go about processing some of these decisions when we had Abel?
In light of what we just shared above, rather than laying out, “Here’s what we did and it’s exactly what you should do,” we’ll speak to how we approached and navigated potential interventions for our son, decision by decision.
In general, early and often, we tried to educate ourselves to the best of our ability. At each sonogram, we’d ask a lot of questions about what the doctors were seeing. For example, when our provider saw that Abel had a heart condition via ultrasound, we began to educate ourselves about that heart condition and asked, “What are the implications of that condition? What will I need to decide right away? What decisions might need to be made after delivery?”
With that said, know that the providers are giving you the best information they can, but the technology is not flawless. Be ready to be flexible. When your baby is born, at that time, you can determine what is truly happening with their heart, their lungs, etc. The reality that we won’t have certain information prior to birth can feel daunting and difficult (see our last post, “How do we navigate all of the unknowns?“), but we still found it helpful to start that dialogue during the pregnancy rather than waiting to process any big decisions until after his arrival.
One useful tool that helped us communicate and process with one another was the illustration of a stoplight: “Am I a red, yellow, green light on that?” Sometimes we were both a “green” light to move ahead with an intervention as a helpful next step in Abel’s care (such as, say, administering oxygen to him after he was born). Sometimes it was a “red” light that we didn’t feel comfortable with. Sometimes we’d land in the same place, and sometimes we’d land in different places (which we’ll talk about more in Episode #3).
Other times, we were unsure and undetermined “yellow” lights, waiting prayerfully and patiently to feel at peace with one direction or the other. We found that often, even if it didn’t happen instantaneously, one or both of our lights would change colors in due time. As we wrote above, we do believe (and we experienced personally) that the Lord will bring peace, clarity, conviction and assurance for how to best advocate for and care for our child — step by step, one decision at a time.
What resources and tangible next steps would we offer if you’re in the thick of this conversation?
Honestly, we would love for any family listening to reach out to us so that we can help you determine your specific wants and desires for your child. From there, we can help you come up with a more specific plan for you.
We talk through quantity vs. quality of life and what that means.
We educate and equip families on all of their medical options in an effort to help them navigate and determine what’s best for their child.
We talk through informed consent and an individualized plan of care, and how to advocate for those things with your medical providers.
We have a set of questions that we give every family that they can take to their medical appointments and walk through with their doctors, the NICU, and any other care teams.
We help you drive for clarity to help ensure that you guys are all on the same page, and that they are willing and able to offer the services that you’re seeking for your baby.
Abel Speaks exists to support families who have chosen to carry a child with a life-limiting diagnosis, and the foundation of that support is rooted in relationships. We certainly hope that our blog and our podcast can serve as helpful supplements to any family reading or listening in, and yet, neither is intended to be a substitute for the more comprehensive care that we’re able to provide when a family reaches out.
If you are a parent in this circumstance, we’d warmly invite and encourage you to reach out by sending an email to firstname.lastname@example.org today. We look forward to meeting you and serving you in every way we possibly can.