We often talk about the impact that medical professionals can have on a family’s experience, for better or worse.
Sadly, it is common for parents to be left wanting in their desire for a medical team that will value their child’s life and partner with them to make the best decisions possible for that child, regardless of the diagnosis. Specifically, it can be hard for a parent to find a hospital that will even consider treatment and care for kids with life-limiting diagnoses. Too often we have seen a tendency to make sweeping assumptions rooted in that diagnosis rather than thoroughly assessing this particular patient and crafting a thoughtful plan of individualized care.
For those reasons, it is also common for us to humbly suggest that they consider switching to a different hospital if they aren’t receiving the care they want for their little one. The reality is that there are amazing hospitals with incredible medical staffs that will provide compassionate care to children and parents alike, and one of our amazing Abel Speaks mamas recently wrote a post that perfectly illustrates this. With no further adieu, we’ll kick it over the Emily! -Kelly & Daniel Crawford
“My name is Emily Logan, and I live in Durham, North Carolina. My daughter Claire has Trisomy 13 and we are trying to follow her lead and give her the best quality and length of life we can. Claire loves music (especially “Baby Beluga” and “If You’re Happy & You Know It”… girl loves the classics), the sensation of going down the stairs in mommy’s arms, and her pacifier. She dislikes sleeping through the night and having her clothes changed.
Last week, we went in for a surgery on Claire’s spine. The procedure went well and we are back home, and I’m still on cloud 9 hoping that we’ve finally found a hospital system that will take care of Claire well. Here are a few examples of things about Hospital 2 that were a 180* difference from our first experience at Hospital 1.
1. As the parent, I was offered options on interventions for Claire.
Hospital 2 suggested surgical intervention for Claire’s tethered cord, so that it wouldn’t cause permanent nerve damage to her bladder, bowels and legs. Hospital 1 didn’t even want to do a MRI to check. When I finally bugged them enough, they confirmed she has all the signs of a tethered cord on the MRI but said we should wait to see if she develops any symptoms before thinking about surgery. That would’ve meant permanent problems, however, and I’m sure at that point they would’ve said “she has these permanent problems now, we won’t put her through surgery on top of all that.”
2. As the parent, my wishes for Claire’s treatment were heard and honored.
When we were getting Claire settled in her room, Hospital 2 asked the typical “code status” question to determine the type of emergent treatment we’d like if her heart or breathing were to stop. But it was the best way I’ve seen that issue handled. The doctor said, “So, I’ve got a sensitive question now,” and he squatted down to my eye level, since I was sitting down in a chair. “We see Claire has a portable DNR (do not resuscitate). What would you like her code status to be while she’s here?”
I said I’d like her to be “full code” status (CPR + intubation if required) because she’s been doing so well for the last 8 months, happy, getting stronger every day and developing well. If something were to require drastic measures, I think it would be a complication of her surgery rather than some inevitable decline for her. And he said okay! And that he just wanted to make sure they followed our wishes because the portable DNR made them wonder if we wouldn’t want “full code” status. But okay, she is full code while she’s here!
That conversation has never gone that well. It’s usually full of loaded language and weird vibes and I can tell if I say “full code,” the doctor doesn’t agree/understand why. (We change our answer to that code status question based on how she’s doing lately, so we don’t always stay at full code.)
3. As the parent, my instincts were consulted (and trusted) by Claire’s doctors.
TWICE, in comparison with the zero times at Hospital 1, a Hospital 2 doctor asked me “what does your gut say is going on?” and then when I answered, they took it seriously and responded accordingly. Usually at Hospital 1, I would try to explain what I thought was happening, and then either it was received with an “okay” and no action or a doctor would actually explain why I was probably incorrect, because “babies like Claire do _______.”
I didn’t walk in and call the shots or anything—I want the people who went to a lot of school for this to call the shots. But when Claire wasn’t improving, they didn’t wait too long to take action and they took my explanation seriously. Specifically, they believed that her spasms, fever, and increased heart & breathing rates weren’t her autonomic nervous system being weird, but was her having an infection.
When we were discharged from Hospital 2, I gave a sincere thank you to the doctors and said this was the best hospital stay we’ve had. They seemed to appreciate hearing that and said they were sorry to hear we’d had bad hospital stays before this.”
-Emily Logan, Durham NC
**Again, if your child has been given a life-limiting diagnosis and your experience has been more like “Hospital 1” above, know that it doesn’t have to be that way. There are “Hospital 2’s” out there that can make all the difference, respecting the wishes of parents and honoring their right to informed consent. A medical team and a parent can and should work together with mutual respect, feeling united as they seek to provide the best care possible for every child, no matter the diagnosis.**
