As a parent, you understand that there will be times when you need to have tough conversations with your kids. When my first daughter, Yasmeen, was born, I had a good idea of what these conversations would look like. I knew that there would come a time when I’d need to prepare her for the changes that would soon happen to her body, or when she’d ask me about “the birds and the bees.” As a pediatrician married to a surgeon, I felt prepared (or as prepared as one can be!) to have these tough conversations — then my second daughter, Soraya, was born.

Unlike Yasmeen, Soraya is not neurotypical; she has a rare medical condition that is similar to ALS, and she is currently in hospice. Though we have searched endlessly for answers since her birth twelve years ago, we still do not have a name for Soraya’s disease. What we can say for sure is that it is neurodegenerative. This means that the skills she fought so hard to learn like talking, walking, and eating will slowly slip away as her muscles weaken, until eventually she loses the ability to breathe.

Having a medically complex child with mild cognitive delays has opened up a whole new world of tough parent/child conversations. (Compared to having to tell your child that they are dying sooner than the average person, talking about something like puberty suddenly feels like a walk in the park.)

Of all the difficult discussions my husband Safi and I have had with Soraya about her health over the years, perhaps the trickiest for us to navigate was when she was provided the option of having a tracheostomy back when she was ten years old. Her respiratory muscles were continuing to weaken, and the tracheostomy would, in the simplest terms, help her breathe.

Though Safi and I are both physicians, we did not have a framework for how to make — or help Soraya make — such a big decision. Like many families in these situations, we learned as we went. It took months of planning before we actually broached the subject with her.

First, we gathered all the information we could about the details of getting a trach, possible complications, and how it would impact Soraya’s overall health in terms of both quality and quantity of life. We requested to have a care conference with all the key players — the ENT (ear, nose, and throat) surgeon, pulmonologist, palliative care physician, chaplain of our faith, and an experienced trach nurse — to discuss and ask questions.

Even though we’d been the ones to initiate the gathering, having everyone together to discuss was intimidating. It was very humbling to realize how much we didn’t know about getting and maintaining a tracheostomy despite being in the medical field ourselves. Safi and I left the meeting very contemplative, still unsure how to move forward.

In the following days, we spoke at length about which way we were leaning, both individually and collectively as Soraya’s parents. We quickly saw that we had differing opinions, which isn’t uncommon for us — the only commonality we had was that we both would be willing to waive our stance based on what Soraya wanted.

We then shifted gears and began to think about what Soraya would need to make this decision. How does she think and process information? Safi and I felt strongly that we wanted the information to be presented to her by her care team, as we knew our personal biases would somehow slip out if we did it ourselves. We had a conversation with her therapist for tips. Then I asked to meet with her child life specialist and palliative care doctor to brainstorm how we could best present this information to her in a way she could understand.

Soraya does well with picture books and visuals, so we had child life create one for us to help get the conversation started. We used the book to tell her, “You are needing your ventilator more. Instead of having skin irritation and wearing a face mask, there are other ways to attach it — like a tube in your neck.” Then when we’d go to the hospital, we would look for kids with trachs so we could show her that many kids have them. Soraya would ask questions casually and we would answer with the same nonchalant approach. These small conversations helped the concept of a tracheostomy become familiar.

After a handful of these exchanges, we told Soraya that her doctors would like to talk to her about whether a tracheostomy would be something she might want. Then we asked her, how do you want this conversation to go?

Soraya made it clear that she didn’t want her palliative care doctor and child life specialist to ask her questions that would guide her decision. She imagined these questions would be something like “Would you rather…” or presenting information in the form of a question, like, “Do you think you would be able to be in the hospital for 6 weeks?” (The minimum amount of time in the hospital after trach placement at our institution). She was adamant about not having a “boring” talk. She wanted it to be short and interactive. We could make that happen!

We set up a time to have the big talk. Prior to our meeting, Soraya’s palliative care doctor put together a list of bullet points for each path she could take — life with a tracheostomy vs. life without a tracheostomy — to share with her. When the time finally came, Soraya wanted Safi and I out of the room while she reviewed these two possible paths with her palliative care doctor and child life specialist.

Option 1: Life with a Tracheostomy

• Requires surgery, as well as being in the hospital for a minimum of 6–8 weeks for recovery.
• Routine hospitalizations for scopes of the trach
• She would never be able to swim again.
• There is a high chance of her losing her voice or it changes.
• She lives a longer life.

Option 2: Life without a Tracheostomy

• She can keep her voice.
• She lives how she is living now.
• She will need her mask ventilation more and more.
• She will not live as long.

It took Soraya all of about eight minutes to decide she wanted to swim, keep her voice, and not live as long.

Once she made her decision, she didn’t want anyone else to bring it up unless she did. She reflected once on the car ride home and said, “This is like an unfair ‘would you rather?’ game except I don’t like either. I either get a thing in my neck and can’t swim or I live how I want to live but don’t get to live as long. Why can’t there be any other option?”

As her parents, we are at peace with this decision as it was HER decision. We (at that point) had invested ten years of therapy, countless doctors’ appointments, and numerous procedures to help Soraya. She has been through so much — she should have a say on what path her life takes.

Over the past two years, we have revisited this conversation and these bullet points any time she becomes overwhelmed with the fact that her symptoms are worsening. This framework has helped her and helped us.

Having tough conversations may never be easy, but it can be easier with the right approach. If you are struggling with how to have a difficult discussion with your child, here is a list that may help you move forward:

• Gather all the information YOU need.
• Try to be aware of what your decision would be and your personal biases that could potentially influence your child.
• Think like your child — What would they need to understand? How can you make that happen?
  • ASK for those essential pieces! You never know if your team is willing unless you ask. You know your child best, and your team’s current framework may not work for your child.
• Allow for numerous small conversations to familiarize the topic.

• The Conversation Project has a Guide for Caregivers of a Child with Serious Illness. This is something I didn’t know existed, and it would have helped me a TON with these conversations. You can decide what parts of the guide fit your needs.
• Revisit as needed and as indicated on your child’s health journey.

 

Pediatrician, author, and parent Dr. Tasha Faruqui’s life changed when her second daughter, Soraya, was born with a rare medical condition similar to ALS twelve years ago. Parenting a child with an undiagnosed condition who is now in hospice care has driven Tasha to become a passionate advocate for families of children with complex illnesses and those with a limited life expectancy.

Tasha regularly speaks about topics including special needs parenting, anticipatory grief, and equity in medical care at Cincinnati Children’s Medical Center as well as Grand Rounds, Keynotes, and Make-A-Wish events nationwide. A hallmark of every lecture she gives? Spreading her family motto: “Suck the Joy Out of Life.”

Tasha chronicles her family’s challenges and triumphs with remarkable vulnerability on her Instagram page, @thefaruqui5. Through sharing honest depictions of anticipatory grief, she has created a space where those navigating this isolating experience can find solace in community and those looking to learn can find resources to better support the people they love and care for. Check out her website (www.tashafaruqui.com) to learn more about Tasha’s powerful work.