Medical Interventions: Tubes, Trach, Surgery etc
The Feeding Tube is a difficult decision. There is no right or wrong.
The mom of a child with Sanfilippo shares how she talked with families who had made decision to get a tube for their child and families who had made the opposite decision. She sums it up so well-- if there were a right or wrong answer, it would be an easy decision!
How we thought about a feeding tube or no feeding tube.
The mom of a child with Sanfilippo talks about how she and her husband thought about how they considered the possibility of a feeding tube. They met regularly with the GI doctor and discussed triggers and timing and implications for decision-making.
You have to make a decision and they’re both bad choices.
The mom of a 12-year old boy with SMA1 describes the challenging decision-making process around her son receiving a trach: The way she thought about it, his medicalization that forced the decision, and where she found her answer. She prayed to God for guidance about what was best for her son.
I felt like I had a clock ticking down in my head.
The mom of a 12-year old boy with SMA Type 1 talks about how she thought about the passage of time in relation to her son's anticipated length of life; how that shifted with the trach; and how she balances her own needs against his indefinite timeline. Quality vs Quantity.
He's doing great. He's fantastic, even if his normal is terrible.
The mom of a 12-year old with SMA1 talks about how she thinks about his quality of life, all things considered. “He can't breathe on his own, that's terrible, he needs nurses to help assist him to make him fantastic. That's why he's fantastic, he has fantastic nursing coverage, his parents know how to take care of him very well, he's got a great environment, a lot of love and I think that's the primary ingredient for your child to happy, is just to love them and spend time with them and do things with them.”
I just couldn’t see our son with the tubes. It was just the way it was.
The parents of a baby with SMA-1 talk about their decision making not to elect a feeding tube or trach for their son. The mom just didn't want her son to be highly medicalized. They describe their son's final day and deciding still not to elect the trach based on what they felt he would have wanted for his quality of life. "He was done, he was tired." "We believe the tubes wouldn't have benefited him, only us."
I remember his breathing but I don’t remember other stuff.
Parents of a little boy with SMA describe the last 11 days of his life and his death, including his struggle breathing and the decision to take him off the ventilator. All the preparation in the world doesn't prepare you for that moment. "We walked down the hall and said it's time."
I learned about palliative care and thought, that’s exactly what we need.
The mother and father of a 5-year old with Leigh's Disease, a mitochondrial condition, share how they learned about palliative care from Courageous Parents Network, sought it out for their daughter, and the difference it has already made in how they feel about the care she is receiving, including during a medical crisis.
Spinal surgery for my son? The most difficult decision I’ve had to make.
The mom of two sons with mitochondrial disease talks about how she and her husband considered all the variables that went into their decision to ultimately forego spinal surgery for their son. It was all about quality of life. "I still don't feel totally at peace with this because I have a visual reminder every day that I decided not to do this. But I know I made the best decision for him because I do not want him living in the hospital because of a surgery that he may or may not survive and that he will need to keep getting."
I always want parents to know they have a choice
A pediatric palliative care nurse shares how the team typically knows a lot about the pros and cons of medical interventions and also how the diseases typically progress, which allows them to be proactive with the family while also reminding the parents that they truly have choices. It’s not about the child NEEDING this or NEEDING that. “There are risks and benefits to everything that we bring.” (The mom of two sons with mitochondrial disease and their pediatric palliative care nurse talk about how they work together to get her sons comfortable.)
We created a space where we examined what the Next Steps are.
Parents of a son with SanFilippo Syndrome and their palliative care doctor discuss how they considered whether to have spinal surgery (fusion) for their son and the role that palliative care helped them in making multi-faceted decisions. It was a ripple effect and we needed multiple doctors to consider the many dimensions. The interventions being considered in their entirety Had To Benefit Him. Doctor: “We get so confused as a medical profession when we say, ‘Well, he’ll NEED a g-tube. You may need a G-Tube to live for a long time but you may not need a G-Tube to live the kind of life you want to live.”
Palliative care helps reframe interventions like feeding tubes.
Parents of a son with SanFilippo Syndrome and their palliative care doctor discuss how they evaluated whether to give Ben a feeding tube. "Doctors go straight from A to B and they don't talk about what's in-between." Palliative care hears all your questions and helps you filter down to the most important things.
Re feeding tubes: It's about asking the right questions.
Parents of a son with SanFilippo Syndrome and their palliative care doctor discuss how the issue of a feeding tube was interwoven with all these other systems and decisions. We wanted all the doctors in the room together talking to each other: "If we fuse his spine, what's the impact on his GI tract?" We wanted to feel like we'd had an open dialogue, not just a directive. Doctor: It's helpful to think about what the benefits/pleasures are of feeding by mouth vs what are the burdens. The Palliative Care role is to introduce the good questions to examine. Father: Palliative care helped us, the parents, make the decision, but it also helped all the providers broaden their perspective and understand the whole patient.
For each intervention, we asked, “Is this going to benefit his quality of life or our family’s quality of life?”
Parents of a son with SanFilippo Syndrome share their decision-making framework. It wasn’t about ‘shoulds’. For example, we stopped tests that would tell us what we already knew, including swallow studies.