my first dive in to the deep end of the advocating pool

“you have to be your own doctor.”

i distinctly remember my mom telling me this. i was in college and my grandparents had been in the hospital (separate occasions). i remember all the things she said about them missing medications, doctors and nurses not reading notes or the charts thoroughly. i remember her saying she (and my aunt) had to tell THEM what was going on and correct their mistakes. i kept thinking, “wow. can it really be that bad?” and “how scary? i am glad they have you to be there with them.”

fast forward to today and i can 100% understand the “you have to be your own doctor” sentiment. to the best of my ability, i have to the biggest advocate for my children. i know this. i do this already in a number of ways, but preparing for brady’s heart surgery was the first time i had to really “fight for him.”

the healthcare system is all kinds of messed up. not getting into politics here because it really doesn’t have much to do with that. but i really think a lot of people don’t understand that you have choices. you don’t have to take what the doctor, nurse, scheduler or insurance company says as “fact.” truthfully, you shouldn’t. you should question them, research things on your, present your findings if they differ from your doctor’s perspective, request second opinions, etc. when it makes sense.

you should feel 100% confident in your doctor’s plans, approach, care, etc. we were NOT feeling this way after meeting with brady’s cardiothoracic (CT) surgeon for our consult. i will get to why in little bit, but i want to ask you a few questions first:

  • if you, or your child, needed surgery, would you feel comfortable waiting until pre-op day to meet the surgeon? (note: pre-op is generally the day before surgery)
  • if while performing the surgery, the surgeon had to remove a part of your (or your child’s) anatomy considered “non-essential” to successfully complete the surgery, would you want to know? or do you need to know?

noodle on these questions as i tell you our story and experience advocating for what we believe is best for brady and his health as it pertains to his heart surgery.

our cardiologist gave us the heads up – brady’s case had been reviewed and deemed ready/necessary to have surgery. we should be hearing from the scheduler to get something on the books in the coming months (this was april). right on cue, the scheduler calls to get brady’s heart surgery scheduled. i had done some research on the 3 CT surgeons at CHOA and had my heart set on one of them, but would have been comfortable with 2 of the 3. of course, as our luck would have it, we can only be scheduled with the one CT surgeon i know least about – dr. shaw. here is how that conversation went:

“are all of the dates you offered to us with dr. shaw?”

“yes.”

“are dr. kanter or dr. subi available at all?”

“no.”

“okay then. looks like we are going to have to go with dr. shaw.”

“great.” (lots of details said) “you will get to meet with dr. shaw on brady’s pre-op day to have any questions you might have answered. since brady’s surgery is on a monday, his pre-op day will be on the friday before. if his surgery date changes, his new pre-op will be the day before surgery.”

i’m sorry. HOLD THE PHONE. you want me to ask any questions i might have for the surgeon on the DAY BEFORE my son’s open heart surgery?? no. that’s not how this is going to work. it will NOT work for me. honestly, how could it work for anyone? if we are not comfortable with the surgeon, we need to have time to find one. the day before surgery does not give us enough time to adequately prepare and feel comfortable. back to the conversation.

“meeting with dr. shaw the day before surgery will not work for me. can we schedule a consultation with him as soon as possible?”

scheduler says, “oh yes of course! you can meet with him whenever you want. he does all consultations on tuesdays. let me pull up his schedule to see when we have his next available.”

why would they not offer this information to everyone? why do i have to ask? i can’t possibly be the only parent who feels this way, yet i bet most parents take the “day before” option because it’s the only thing mentioned or offered. this is one example of how the healthcare system is flawed.

side story: one of the many ways the down syndrome diagnosis network supports parents is with facebook groups specific to your child’s needs. enter in the most valuable group to date – DSDN heart heroes. this facebook support group is only for parents of children with down syndrome and a heart defect. i had just seen a post from another mom asking for good questions to ask your baby’s CT surgeon. i read the thread and hundreds of comments. one comment kept popping up on the post “ask the surgeon to keep the thymus.” i took anatomy in high school. i have no idea what the thymus is or what it does. so i google. here is what you need to know (Wikipedia explains it best:

the thymus is a specialized primary lymphoid organ of the immune system. Within the thymus, T cells mature. T cells are critical to the adaptive immune system, where the body adapts specifically to foreign invaders. … the thymus is largest and most active during the neonatal and pre-adolescent periods. by the early teens, the thymus begins to atrophy and thymic stroma is mostly replaced by adipose (fat) tissue.

sounds pretty important to me. especially with brady already having a weaker immune system. of course we want the surgeon to keep his thymus. duh! so glad i saw this and looked it up.

fast-forward a couple weeks later and we are at the consultation appointment with brady’s surgeon. i was armed with questions, but the most important question “can you leave his thymus?” dr. shaw plainly states, “i routinely remove it. in order for me to get the best view on the heart, i need to remove it.” we asked if he could leave part of it and he said he would “try.” red flag.

within 24 hours, we pretty much decided this guy was not going to be brady’s surgeon. i had read a hundred of parental anecdotes stating their child still has some or all of their thymus. they found surgeons who were skilled enough to keep it, so we would too. in the meantime, we had to do more research. we wanted to know if we were being crazy in wanting to fight for keeping his thymus. was there research to support its importance? do the other surgeons in atlanta practice the same way?

so it began. the research. the back-and-forth. the “fighting.” research will tell you just what wikipedia did. it will say that once removed, your body’s immune system basically compensates for the loss of the thymus (thus it being “non-essential”). however, there is no research on this topic specific to the down syndrome community. for us, if it is possible to be kept, then we want it kept. we called two different adult cardiologists for 2nd and 3rd opinions. called our own cardiologist and explained to him that we were not happy with dr. shaw’s answers or confident in his ability to perform the surgery the way we wanted it done. i explained to him that there were mothers in atlanta who had their child’s surgery done here and the thymus was left 100% intact. how could they have it done, but we couldn’t? someone was lying to us – the surgeon or these parents. we told our cardiologist, if it’s not done the way we want, then we are willing to travel to another facility to find a surgeon who can. end of rant.

our cardiologist is amazing. he came from boston children’s  – the number 2 hospital in the US for pediatric cardiology & heart surgery. he called old colleagues, spoke to every surgeon in atlanta, reviewed cases claiming to have the thymus kept, reviewed research on the importance of the thymus and the immune system. within 48 hours of our complaint, we had all the answers.

it is standard practice to remove partial or all of the thymus during open heart surgery. this is what surgeons in boston, atlanta, texas, etc. all subscribe to.

it is important for immune development and should be kept intact as much as possible, especially for brady.

our surgeon is capable of performing a partial thymectomy and will do so. it is in his notes, it has been said face-to-face to us and our cardiologist. they understand we are not messing around about this.

at the end of all of this, we felt the confidence we needed to feel in dr. shaw to move forward as planned for brady’s surgery. we won our battle. but this brings me back to my second question:

  • if while performing the surgery, the surgeon had to remove a part of your (or your child’s) anatomy considered “non-essential” to successfully complete the surgery, would you want to know? or do you need to know?

the answer to this question should be yes. but what i have learned in my experience is that it is actually no.

if we didn’t specifically ask about the thymus, no one would have mentioned to us that they remove it. they don’t mention it even after surgery. the CT surgeon’s goal is to successfully repair the heart, so they don’t talk about the thymus. this is why parents think their child has their thymus. parents think that because the surgeon never mentioned the removal of anything, it must still be there. wrong.

after messaging with a few other moms, they were horrified to learn when they went back to the surgical notes and records that their child’s thymus was removed. they had NO idea. a few of these moms don’t have to worry about the immune issues because their kids don’t have down syndrome, but it would still haunt me knowing it was never discussed or seemed important enough to do so. another example of the flaws in our healthcare system.

advocating is hard work, but you have to stand firm in what you believe. “you have to be your own doctor.” (i am becoming my mother ha!)

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your prize for making it through the whole post 🙂

4 thoughts on “my first dive in to the deep end of the advocating pool

  1. I can remember standing toe to toe with my mom’s doctor….literally….and demanding she be transferred to another facility immediately. Advocating for a patient is not for the weak. Be strong Moma Bear.🙏

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  2. Stephanie, Been praying daily that you and Mike be given the courage, strength, endurance and discernment to make the next set of decisions in regards to Brady. Been keeping Brady’s surgery in daily prayer . Sharon Tavolieri

    Sent from my iPad

    >

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  3. Just found your blog, sending love to you all as you face the surgery. I know you’ve found a facebook group, but can I just mention Down’s Heart Group http://www.dhg.org.uk we have a website and Facebook presence and we’ve been around since 1988 and although in the UK, we do allow e can to support everyone else too.

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