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.