Yes, no and maybe: about doctors

Here’s another comment I wanted to pull out for discussion–this one is from Ellen.

She writes:

What I forgot to say in my blog is along the lines of what you said: I wish I would have known that Max would do better than the doctors said he would. Of course, nobody could have known what the future held—but if the damn doctors hadn’t done such a number on us at the hospital where he was born, after he had the stroke, maybe I would have had more faith and hope. You know that memory eraser gadget Will Smith used in Men in Black? I wish someone could have waved one of those over my brain to rid it of all the terrible things the doctors predicted. Max has amazed us all. I’m sure you feel the same about Avery.

Our experience with doctors, with regard to Avery, has been a mixed bag. The pediatrician who gave us the Dx did a lot of things wrong (she didn’t tell Tom and me at the same time, she didn’t have any information to share, she didn’t give us the names of local families to contact, she went on vacation the next day, so we had to wait to ask her our many questions) but she did a few things right: she gave me the Dx using neutral language, and she was empathetic. 

I really believe she was in a tough situation, one she’d never been prepared to face. I think back on that time and the picture in my mind is of the two of us, bewildered. She didn’t know what to do, and neither did I.

Since that time, a lot has changed. The ACOG revised (twice) their recommendation for prenatal screening. The Kennedy-Brownback bill passed. And yet, there are still many, many situations where parents and doctors find themselves facing off, as adversaries.

I wrote about it here, and here. Just recently, we switched family practitioners and I again felt that familiar defensiveness: would this new doctor see Avery, or would he simply see Down syndrome? Thankfully, he sees Avery.

What has your experience been with doctors? How have you learned to cope?

11 thoughts on “Yes, no and maybe: about doctors

  1. I’m behind on blog reading :/

    Here’s what my experience has been (let’s see if I can keep this brief). Finn was a planned homebirth, so I didn’t have any prenatal genetic screenings done, despite the fact that I was 40 (which I don’t regret, by the way). The first inkling that he might have Ds came from my midwife after he was born, and she was extremely sensitive and compassionate about it. His actual diagnosis came several days later after he had surgery to repair the intestinal blockage he was born with, and recovering in the NICU. The geneticist who delivered the news to us was very, very kind and compassionate. Everyone in the NICU was very sensitive about it from what I recall. Nobody ever left me with the impression that this baby never should have been born, and they all had encouraging words to offer. I suspect it probably would have been a diffent experience altogether had Finn’s Ds been discovered by an OB prenatally. It was very difficult to digest and accept the news post-birth, but I really can’t think of any way in which it could have been handled better.

    Our pediatrician has been great. He’s been our ped since our eldest was born 12 years ago, so he’s seen us through 5 healthy, “typical” kids. He’s wonderful with Finn, and it seems to me that he sees Finn and not just the Ds. The only regrettable experience we’ve had concerning our ped and Finn was very early on when Finn and I were really struggling to establish breastfeeding and Finn was not gaining weight. The ped advised me to supplement with formula, and I felt completely crushed. I ended up not supplementing with formula but instead seeking the help of a lactation specialist who helped us work out the bf kinks and Finn started nursing like a champ and gaining weight. When I went back to see the ped, I told him that he would better serve his mothers who are motivated to breastfeed by recommending a good LC rather than advising formula right off the bat. He took what I said to heart and then admitted that he had assumed that Finn would never be able to nurse well because he has Ds. That made me really sad, but I believe he learned something from the experience: to see Finn as a unique individual and not just a diagnosis.

  2. Each fall, I do presentations to 2nd year medical students about how to “deliver the news” to parents, and Paige always goes along with me. At the end of the presentation, I ask them to remember her, that her eyes are the color of your favorite pair of faded blue jeans, that her hair is like corn silk, still warm from the summer sun – to remember that she loves music, and adores reading – that she is a person, far beyond the statistics and facts that they will be presented in medical school. I hope that is a key factor that they hold on to when they start their careers.

    Also, its important to know that the average medical student spends less than 18 hours of total time in medical school studying genetic conditions such as Down syndrome. In fact, this 18 or so hours usually encompasses more than 8,000 recognized genetic conditions. Its no wonder they feel ill prepared to deliver the news!!

    Perhaps this task would be better suited to a geneticist, or person who works in the genetics department who’s main task is to learn about these various conditions, and to learn exactly how to deliver the news in a fair, compassionate way.

    If such a job description existed, I might just be taking this 44 year old body back to school 😉


  3. The above responses deal with two sides of presenting Ds: (1) the way medical professionals relay the diagnosis to the parents and (2) parents revealing their child’s diagnosis to others.

    Related to issue #1…Through local affiliates, parents can become involved with the Changing Lives program (a NDSS-developed program which educates physicians, nurses, genetic counselors, and other health care professionals about the clinical and developmental needs of people with Ds). Educating medical professionals is an essential step in ensuring great health care for our children. Too many physicians, nurses, hospital staff, genetic counselors, etc. have never met anyone with Ds, and may have learned only outdated information about the condition. Getting accurate, up-to-date information into the hands/hearts/minds of these folks is of great importance.

    With regard to #2, or revealing our child’s diagnosis to others…this is a very personal thing. Understanding that the way we present the information is likely to impact the way others view our children is key. I’ve found that brief, straightforward, positive and unapologetic is the right method for me. I also know that I don’t owe anyone (save medical personnel) any type of explanation…and it feels good to cut myself some slack. I usually don’t have any problem addressing the Down syndrome issue if it seems important for some reason to do so. I’ve found that people tend to follow my lead. If they are on some other path, I don’t pay much attention. To me, Bridget is Bridget. She’s awesome! I think most people can tell for themselves that she is awesome…and that she is developmentally delayed.

    That said, our experiences with Bridget’s doctors have been mostly positive. We did come across one particular attending surgeon when Bridget was first born who treated her in a very detatched sort of way. He actually referred to Bridget and other children with Down syndrome as “these kids”. His exact comment was, “These kids tend not to do well with feeding by mouth” (which he used as his reasoning for wanting to place a G-tube in Bridget’s stomach). What he did not take into account was Bridget as an individual…and he severely underestimated her abilities as well as my determination to advocate for her. If he would have looked or asked, he would have noticed that she was showing very promising signs of wanting (and being able) to eat. She proved him wrong, by the way, and was able to eat successfully by mouth just a few weeks later.

    The doctor that delivered Bridget (not my OB) and the neonatalogist who delivered the news were both excellent and did everything right. Looking back, we are so thankful for their professionalism as well as their care and concern.

    We have a wonderful pediatrician who genuinely cares about our each of our children. She is attentive, thorough, open and creative in the way she treats all of her patients–and this is no different when it comes to Bridget. She does not specialize in Ds, but does pay close attention to Bridget and is well aware of all medical screenings and guidelines we need (we also do have a few other specialists). Our pediatrician takes the time to become educated on things that matter to us for one reason or another (health concerns, developmental issues, or Ds-related therapies or protocols). We have a partnership…I look to her for medical advice and she looks to me for information on Bridget. We work together, carefully weighing benefit vs. risk, each step of the way. I pay close attention to what’s normal for Bridget and have also learned everything I can to be up-to-date and informed to best lead Bridget’s care.

    One of the most important things I’ve learned about parenting in general is that WE are experts on our children. We are their biggest advocates. Whether dealing with a diagnosis of some sort or in parenting “typical” children, we know our kids best and and can manage their care like no one else can…

  4. I love all these thoughts and suggestions!

    hannah m, you’re so wise to realize that we do have a say in the care our kids get…we are the consumers of services, and we have a right to demand quality from our providers. Good point!

    And I too love the cup of coffee test!

    starrlife’s point is excellent too…we need to be clear about what we want from our providers. Is it medical skill? Is it friendship? Is it guidance? Some combination of all three? The answer will be different for each of us.


  5. I have LOW expectations of Dr’s- I work with them and they are, in general, not a socially skillful lot! If a Dr has some skills I am satisfied and I seek my comfy conversations elsewhere. But of course I didn’t even have any MD for my birth and pregnancy so I guess you can tell that I’m not impressed with medical as the answer to all things. In my fantasy’s I would have all MD’s take a whole year to learn people skills! I look for medically talented and curious Dr’s that can help with medical problems and don’t look to them for counsel or even compassion- it is nice if you can get it but, bottom line, I need someone who knows more than I do in their specialty. And since I am an infamous Know-it-all, LOL….
    I have to say I love the coffee test method!

  6. Oh no! @ CJ’s doc. Good grief!

    Overall, I haven’t been impressed with our medical support, but you know what? It has made the rare good ones even that much better in my mind.

    I am so tired of hearing “Are you sure?” that I’m going to lose it. Do they really think that we’re making up the diagnosis? Really?!

  7. My daughter has A LOT of specialists, and early on I made a promise to her and to myself that I would only surround ourselves with doctors who were uplifting, warm, honest, knowledgeable and interacted kindly and genuinely with my daughter.

    Before my daughter was even born, I used the “coffee test” to choose my own doctors. The test is simple: Can I imagine sitting down to coffee with this doctor and enjoying a conversation? If not, move on. If yes, I may have found myself a keeper. I use this “coffee test” for all of Viv’s specialists, and I must say, we have created quite an amazing team to support her and us on this journey. Despite our myriad appointments, I truly look forward to most of them, knowing special doctors care for my daughter and want to support me in helping my daughter thrive.

  8. I’ve had mixed experiences. Our family doctor is great. Some of the medical personnel at first I’d like to have bopped over the head, but all in all it’s been okay.

  9. This is a very interesting topic.

    I’ve done presentations on ‘disclosing diagnosis’ so I’ve done some lit reviews about it. Medical students don’t get taught how to disclose diagnosis in medical school. And they are uncomfortable with the notion that they cannot ‘fix’ kids with disabilities, so I think they are way out of their comfort zone when it comes time to tell parents a diagnosis. They don’t know what to say, or how to say it. It isn’t an excuse at all (our son’s diagnosis was terribly terribly botched), but it is good for us to understand.

    There ARE right ways to ‘share the news’. Our Canadian Down Syndrome Society has a pamphlet that talks about it:

    My feeling is the more we can get the word out to health providers as to what we need as families, the better it will be (maybe not for us, but for parents who come after us).

  10. When I took J in to the ER for something, the doctor asked for a run-down of her med history, I explained everything EXCEPT the Down Syndrome, as I felt that was obvious to a medical doctor. He said, “Anything else?” I said, “Well, not aside from Down Syndrome.” His response? “Oh, good, you know! I was afraid I was going to have to break that to you.” Jerk.

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