Artists and lone wolves

Right after Matthew died, I left my bed only to meet visitors in our living room. One day, though, I just couldn’t. That day was especially dark, my “I want to die” feelings particularly intense. Mark warned ES I wouldn’t get up, gave her an easy out. But she visited anyway.

ES sat at the foot of my bed for an hour, listening as I sobbed and explained I wanted to die. She said she wanted me to live. And her mere presence comforted me, encouraged me to live another day.

I’ll eventually devote an entire post to this beautiful soul, ES, one of a few who’s shown me how to support another through tragedy. But, one day at Starbucks, ES and I had a conversation worthy of its own post.

ES teaches art at a local K-6 private school. She too has a son named Matthew. Her Matthew is a sweet, energetic, happy eight-year-old who plays soccer and crafts impressive Lego structures. And he also has a congenital heart defect (CHD).

That day, ES spoke enthusiastically of Matthew’s upcoming MRI, which would allow doctors to create a 3D printout of his heart. She also spoke of Matthew’s brilliant heart surgeon, Dr. Edward L. Bove, MD. And she described she’d recently used Dr. Bove to illustrate the importance of art class to her students. She’d explained:

We take art to learn to think in new ways. Art is about problem-solving – when you have a blank paper or piece of clay, you have a giant problem to solve. Even if you never become a great painter, drawer, or sculptor, you can still become an excellent problem solver. 

Dr. Bove was faced with a CHD that could not be solved – no one thought people could live with this CHD. But he wouldn’t accept death as the answer. Instead, he solved the problem. It’s as though he filled a blank paper.

So you should think of learning in art as part of learning for life. You should accept challenges to fill papers, solve problems, and take risks along the way. While you may never become a great painter, you’ll remember what it felt like to try to find a solution. You might fail along the way, but, eventually, you’ll learn and grow from it.

I asked ES more about Dr. Bove, and she shared this powerful video.

Apparently, until 1982, children born with single ventricle hearts (half a heart) were sent home to die. Deciding this was unacceptable, Dr. Bove vowed to find a better solution.

Initially, Dr. Bove faced resistance, but he worked relentlessly, researching and perfecting his surgical skills (to fix this CHD). By 1990, the surgery was more common, though, most surgeons achieved a 40% success rate, while Dr. Bove achieved a 70% success rate. Today, the surgery has an overall ~90% success rate.

The video features one patient born in 1994, Tyler, whose parents were told he would die. But Tyler’s parents found Dr. Bove. And, as a result, at the time of the video, Tyler was a healthy 17-year-old and a star baseball player. The video features other patients born in the 80s or 90s, none of whom would’ve survived if not for Dr. Bove.

ES and I discussed how Dr. Bove and those like him are lesser known heroes in this world. They’re a rare breed, “artists” in their own right, and, as I sometimes also like to call them, lone wolves.

They’re lone wolves in the sense they must possess immense courage, determination, emotional fortitude, self-confidence, and hope to pursue solutions to problems others believe don’t exist, affect too few, or have already been solved, often while facing fierce resistance, frequently from those whose egos are threatened by the solutions they’re proposing.

Our Starbucks conversation was three months ago, yet I still think about it. And, I’ve come to believe, those who persistently challenge the status quo by courageously attacking problems despite strong resistance – those lone wolves – they’re the biggest difference-makers of anyone.

And I can’t help but think I’m lucky enough to have encountered a special lone wolf.

**********

Mark called Dr. Jason H. Collins, MD days after Matthew died. It’s not difficult to find him – he’s the only doctor in the United States currently researching umbilical cord accidents (UCA), and Matthew died of UCA. So we googled “umbilical cord accidents” and found him.

Dr. Collins’ Twitter page says, “Please contact me if you have an experience with #umbilicalcordaccidents,” and since Mark doesn’t need to be invited twice, he called Dr. Collins immediately.

In the weeks following, Mark spoke with Dr. Collins as part of his healing process. Mark wanted to know exactly what happened to Matthew, and what we could do, if anything, to ensure it never happened again.

I didn’t speak directly with Dr. Collins. I wasn’t ready. So I let Mark do it. And we sent Dr. Collins our medical records, and we exchanged emails.

In the meantime, we met Lindsey Wimmer and Shauna Libsack, founders of Star Legacy Foundation. When Dr. Collins came up in conversation, they shared a story – they once asked Dr. Collins why he devoted his career to researching UCA. To this, Dr. Collins pulled from his wallet an old, worn picture of a baby – the first baby he lost, 35 years ago, to UCA. And he answered, “This is why.”

Not only did this story confirm I’d want Dr. Collins on my side in a subsequent pregnancy, it also confirmed I’d speak with Dr. Collins someday. When I was ready. Because it only took one for him to declare, “This is why.” And people like Dr. Collins are lone wolves, and they’re special, and the more of them I know, whether or not they eventually help me directly, the better off I am for having known them.

Recently, the day came. I called Dr. Collins and left a message. And he returned my call minutes later.

For two hours, we discussed Matthew and my recent doctor appointment, stillbirth and UCAs, prevention measures and probabilities, health care in the US and globally, and The American Congress of Obstetricians and Gynecologists (ACOG) and the medical community.

And Dr. Collins also confirmed what we’d heard from Lindsey and Shauna – that it only took one. It only took one near-full-term baby dying from UCA for him to devote his career, and his life, to finding a solution.

I listened as he explained that fateful day 35 years ago, when, after a morning of fishing with her husband, a patient (36 weeks pregnant) called with concerns of decreased fetal movement. Dr. Collins instructed her to come into the office, but, by the time she arrived, her little boy was gone. He died from cord compression caused by severe cord entanglement, but was otherwise healthy.

**********

After we hung up, tears quickly filled my eyes thinking about the rarity of the Dr. Collins-types. Thinking about this baby’s impact on the direction of his career and on his life. Thinking about how Dr. Collins is one of only a handful in the world concerned with reducing the unacceptable stillbirth statistic (~1/160 in the US). Thinking about how he took this baby’s death so personally, he devoted his life to saving hundreds of others from similar fates. Thinking about the resistance he’s faced and criticism he’s received for daring to believe he can save thousands more.

And I cried out of frustration. Because, through my interactions with health care professionals and with my many bereaved parent friends, I’ve noticed a troubling theme – even with the best health care professionals, what would seem to be an appropriate level of professional curiosity is markedly absent.

I don’t hear stories of stillbirth or infant death changing doctors’ career paths or even practice protocols. And rarely do I hear stories of doctors taking bereaved parents’ losses personally (though, this hasn’t been my personal experience).

Instead, I hear, or I’m relayed, the same old pathetic horseshit ad nauseam.

This just happens sometimes. It’s so rare. It’s like being struck by lightning. Twice. In the same day. It’s only happened one other time in my career. There’s nothing we could’ve done. We followed standard of care. We can’t see umbilical cords on ultrasounds. Who’s Dr. Collins?

And I’m incensed. That a parent’s world crashes down, and he/she’s told, flippantly, “Sorry, this just happens sometimes.” That the lightning strike analogy is grossly misleading (1/160 vs. 1/12,000). That it seems every doctor insists stillbirth has occurred only one other time in his/her career, despite it occurring 26,000 times/year in the US.

That US standard of care sucks, yet our arrogance, as Americans, prevents us from recognizing this. That it takes a mere Google search to show those who insist umbilical cords aren’t visible on ultrasound are full of shit. That bereaved parents often educate their doctors about Dr. Collins, when, if these doctors were abiding by their professional responsibility, they would’ve already fully investigated cause of death, stumbled upon Dr. Collins, and at least considered the merits of his research.

I’m sorely disappointed in the apparent rarity of professional curiosity in all professions, but, especially in the health care profession. Health care professionals are often brilliant and caring, and they save lives. And I know they’re only human. But, it often seems, as it relates to stillbirth, their attitudes are sickeningly blasé.

Not all 26,000 deaths/year are preventable, but some very smart people hypothesize that thousands of them could be. And, there’s few other areas in medicine where we give up so easily – give up conducting research and promoting awareness, telling those affected, “Sorry, this just happens.” (e.g. SIDS, which claims ~2,500 lives/year has far more research, awareness, and prevention efforts compared to stillbirth.)

I’m aware of the endless complexities surrounding this broad topic – a broken health care system, skyrocketing health care costs, OBGYN shortages, legal liability, etc. I’d need thousands more words to address any of one of these topics.

But I’m still alarmed by what I perceive to be an absence of professional curiosity as it relates to stillbirth.

And I wish there were more Dr. Boves and Dr. Collinses in the world.

Because I believe Dr. Collins is onto something when he says umbilical cords can be thoroughly imaged on ultrasound, and, if problems are identified, they can be managed to better outcomes.

And I think the hundreds of families who’ve worked with Dr. Collins agree. And like Dr. Bove, Dr. Collins has pictures of adults, alive today only because of his research. So I wish more would pay attention to him.

I’m grateful to have Dr. Collins on my side, now, and in the future. But I’m also so sorry he’s a lone wolf. There’s few like him. And, even after loss, to get superior care, patients must educate themselves and advocate hard.

I hope Dr. Collins continues to gain traction, and some more like him emerge. Dr. Collins often explains, “We’re in a new age with social media. Women are sharing their stories. People google ‘umbilical cords on ultrasound’ and find information. The mothers will eventually win.”

I try to do my small part in all this by repeatedly challenging my doctor on why her profession’s accepting of 1/160, on questionable things she says (e.g. the lightning strike analogy), and on so many other topics (e.g. how it statistically makes sense to mass screen for gestational diabetes, but not other, more common causes of stillbirth).

I encourage everyone in my position to do the same.

Because I hope that, even if no one pays attention, Dr. Collins is correct when he says the mothers will eventually win. Because the current, prevailing attitude just isn’t acceptable.

**********

And I’m thankful for my friend, ES, the art teacher, who encourages her students to be problem solvers. Her words may be the most important ones these students hear in all their years in school. And, I think, if these students remember her words, they’ll learn to challenge the status quo, impacting the world in huge ways (don’t you love the big, fat, idealistic bow I just placed on all this?).

But, in all seriousness, ES’s school is expensive. So expensive I once believed it was excessive. But these kids get to learn from ES. And she teaches them great things. And maybe what she teaches them will stick… And a few of them will become artists or lone wolves. And that alone would be worth the price of admission.

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27 thoughts on “Artists and lone wolves

  1. I am so glad you have Dr. Collins as part of your team now. Its such BS that you even need him, but I am glad he is there. I am also very angered about our healthcare system and low standard of care. Thanks for helping bring awareness, Christine. You are so brave.

    Liked by 1 person

  2. I am so very grateful for doctors like Dr. Collins and Dr. Bove, and for teachers like your friend. I hope that someday, the death of a baby will truly be a rareity, something that warrants action and questioning and legislative change. I am still so confused at the reaction of most medical professionals after the death of my daughter. They certainly weren’t happy, but it was almost too accepted. Almost too quickly, as something that “just happens”. I wish we could stop this from happening to anyone ever again.

    As always, great post! Thanks for sharing and for educating others about where we are falling short in terms of prenatal care. It’s something people need to be discussing more.

    xo,
    Nora

    Liked by 1 person

    1. Thank you for this kind comment, Nora. I agree, even with those who aren’t happy/seem to take it personally, it still seems a bit too accepted… I hope people keep talking about it to break the silence on this issue. xoxo, Christine

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  3. Thank you for the post. I posted about the medical profession (https://lukewyattmoxley.wordpress.com/2015/09/28/guinea-pigs-aka-effin-doctors/) and how unhelpful it is when it comes to finding solutions to unexplored problems. In each of the major medical problems I have encountered – Lyme disease, low milk supply, colic, stillbirth – there is a “lone wolf” doctor, to borrow your term, who has taken it upon themselves to find an answer, to the ridicule and disdain of their colleagues. I get all the things you mentioned above tying people’s hands (insurance, shoddy health care system, etc) but the ridicule and disdain is another category. That just seems like laziness and hubris. I guess we can only add our voice to theirs in the hopes of making a change; persistence and advocacy are a few of the gifts we can give to our children after they are gone.

    Liked by 1 person

    1. I agree with every single word you say here. Despite the complexities of everything, the ridicule and disdain is another category. And professional curiosity is possible even with challenging circumstances present. I just do not understand why a few more can’t be curious when a healthy baby dies. I don’t know why so many patients research their child’s death, while, in the meantime, most doctors conduct NO research at all and settle for, “This just happens sometimes.” Bullshit. Yes, this does happen. And yes, not all deaths are preventable. But where is the curiosity? I read your post and agree with it, and I’m glad you posted on this topic too. People need to keep talking about this issue. Thanks for being one of those voices.

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      1. To follow up on this, I’ve been working with a placental pathologist at Yale who is reviewing my case and I plan to travel to meet with him sometime soon. He sent my doctor his report on DEC. 2 — and she NEVER contacted me. I only found out the report was ready because I finally decided to call to get an update since I had initiated the review in late October. I’m so annoyed; it reminded me of what you said about how there is no professional curiosity about our causes except for these lone wolves; they just dismiss it as something tragic but don’t seem to care to look into it further. I can’t imagine WTF is wrong with my doctor and am trying not to think that she is an insensitive a-hole.

        Liked by 1 person

    2. I’m responding here so you get my reply on your last comment (it won’t let me respond there). OMG – this is exactly what I’m talking about with the professional curiosity thing… I am glad you are pursuing answers with Yale, but I am so very sorry your doctor appears to not be so responsive to/interested in them. I’d be incredibly irritated too. I just think it is not that much to ask that if I’m a patient, and my healthy near-full-term pregnancy ends in the death of my baby, that my doctor should be not only sympathetic, but also extremely curious about anything related to what might have caused his death… I am hoping for your sake that next time you talk to your doc, you will learn she has fully reviewed ALL the details of the Yale file – you’ll have to fill me in on what happens with all this. xoxo, Christine

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      1. In my bitter and angry place, where nearly everyone is a disappointment, I’m not holding out much hope for my doctor, but we’ll see. I will be posting an update at some point soon. (Tiny note: we were actually full-term, 37 weeks.)

        Liked by 1 person

  4. Reblogged this on Stillbirth Matters and commented:
    Not long ago, yet it seems like ages, we had the good fortune of meeting Mark & Christine Ommen although the circumstances were far from fortunate as they had just lost their precious Matthew to an umbilical cord ‘accident’. I say we had the good fortune because this is an amazing talented young couple who now share our passion at Star Legacy Foundation​ for preventing stillbirth. Christine began blogging as a therapeutic release but she has a true gift for putting on paper what so many of us have come to understand along our own journeys. Read this blog and then read the rest – they are simply amazing. You will no doubt subscribe to her blog as we have so you don’t miss anything. Little Matthew is impacting so many through the voice and pen his Mother provides.

    Liked by 1 person

    1. Thank you Shauna for commenting and reblogging. You are too kind. I hope lots of people read and we can continue to spread the message that the current attitude about stillbirth in the medical profession is unacceptable.

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  5. Thank you for so eloquently and passionately speaking on the topic of stillbirth. After the stillbirth of our grandson two years ago, I was fortunate to begin a friendship with Shauna Libsack who was my rock and source of information. I was honored to meet Dr. Collins at the Star Legacy Summit in 2014, and was able to discuss the circumstances surrounding my grandson’s stillbirth…also a cord issue. He is a hero to all of us. And there are others who, like Dr. Collins, are dedicated to finding the causes of and ways to reduce stillbirths. We are grateful for them all.
    Shauna and I have shared numerous ideas and frustrations over the past two years. It will absolutely take the families of stillborn babies to break the silence, raise awareness and fight for needed changes. You are already a leader…thank you for speaking for all of us!

    Liked by 1 person

    1. Sue, thanks for reading and for your kind words. I am so sorry about your grandson – it’s heartbreaking. I’m glad you’ve connected with Shauna – she’s simply amazing. And that is great you got to meet Dr. Collins and hear from some of the other heroes devoted to this issue. I am so grateful for all of them too. I hope people continue to speak out. I know I’m going to!

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  6. Thank you for a great, heartfelt post about your experience. I’m sorry you had to suffer but glad you found someone to fight your corner and for the many others in the same position.

    I wrote a post about some of the very similar experiences in England. https://shoeboxfullofmemories.wordpress.com/2015/11/20/nhs-maternity-review-our-say/

    There are common areas around lack of compassion and competence. Your point about medics being curious is really interesting.

    Thanks again for sharing. It can’t have been an easy thing to write for you and I’m grateful that you did.

    Liked by 1 person

      1. Thank you! My recent posts have been a little less doomy and grief focused (happy, Christmas, social commentary and a TV review) but I’m sure I’ll revert to form soon enough.

        Liked by 1 person

  7. Yes, yes, and yes. After an umbilical cord accident killed our daughter, we spoke with Dr. Collins too. I had a completely healthy and low-risk pregnancy until my daughter was suddenly dead at 34 weeks. And I also encountered a lot of shrugging of the shoulders. My daughter’s cord accident was due to a constriction in the cord. I have yet to meet anyone else with a loss due to constriction in the cord. I am unsure how easy that would have been to see in an ultrasound but I do suspect an NSTS would have shown decelerations. We’ll never know.

    I can say, though, that I was so disappointed to learn that Dr. Collins no longer offers home-monitoring for subsequent pregnancies after cord accidents. He says the equipment is no longer being made. That seems like a huge are backward to me. I am holding my rainbow daughter in my arms right now, but I would have had much less anxiety during my pregnancy had we had home-monitoring.

    Also, why did my child have to die for me receive the level of care I had with my rainbow?

    Liked by 1 person

    1. Thanks for reading and for commenting. I am not sure why our children have to die for us to receive better care. Even with Matthew, I was monitored as high risk, but it didn’t matter, because they weren’t looking at the thing that killed him (his cord). It shocks me that, next time, despite that Matthew died from a cord accident, they STILL would not look at the cord unless I FORCE them too. I just think that is the dumbest thing ever, yet that’s how it is…

      I am aware Dr. Collins no longer offers home monitoring with those machines. But my understanding is that he does still consult with pregnant women remotely (i.e. by viewing ultrasound pictures, instructing your docs on how to image the cord, reading fetal heart rate strips (even those collected via a machine you purchased yourself for home monitoring, which isn’t ideal, of course, b/c it’s potentially too costly for some, but at least it’s maybe possible…)) I’m thankful for that and hope some form of home monitoring will eventually become easier to get. It would certainly provide some added assurance in a rainbow pregnancy, wouldn’t it?

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  8. Beautiful post and I’m so sorry about your loss. Dr. Collins is my dad and when I got pregnant with twins two years ago, he took incredibly good care of me and made sure they both were healthy every step of the way. I wish you lots of peace and healing. Please keep writing as you certainly have a gift.

    Liked by 1 person

    1. Catherine, Thank you so much for reading and for your kind comments. I’ve read your guest post about your dad on the Stillbirth Matters blog, and it was so touching. I’m so glad he was able to help get your twins here safely. Your dad is a hero to so many, including my family and me. We are so thankful for him!

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  9. Hi Christine, beautiful message of fighting against the grain, you’re truly amazing.

    May I ask you how exactly you found out Matthew died of a chord accident? Blood test? Physical evidence at birth? Autopsy? We just had our “results” appointment last week with the High-Risk Doctor. We still don’t have the autopsy report, but all the tests from the amnio and blood tests show everything looked fine. They say it is completely unexplained. Thanks Christine xxx

    Liked by 1 person

    1. Hi Melina, Thank you for reading and for your kind words 🙂 ❤

      So they were pretty sure of Matthew's cause of death right away (physical evidence at birth). The could see the knot and the two nuchal wraps. The knot was tight, and I think the two nuchal wraps made him basically run out of cord/cut off oxygen… And the autopsy turned back no findings, so they're nearly 100% sure it was the cord…

      I am so sorry your appointments haven't turned up answers (not that it would make it any easier, but it would be nice to have more information). Maybe the autopsy will show something? Ugh, I hate how so many of these go unexplained. I think even some cord accidents go unexplained – I don't think they'll rule anything a cord accident unless there's obvious evidence, and sometimes evidence is disturbed with the delivery process.

      Thinking of you all the time… xoxo, Christine

      Like

      1. Thanks Christine, for some reason I didn’t get the results for a potential coagulation problem so I have to redo a blood test (oh joy!). It could very well be that since this is common. But apparently it is most common to have “no answers”, can you believe it? I’m still wrapping my head around this and think about that point decades from now where the medical community will have their ‘aha moment’ and figure this out. In the meantime this makes me really question, as you say, why there isn’t more medical curiosity as to a cause.

        Liked by 1 person

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