And a Child Will Lead Them

March 9, 2011

This week I lost one of my patients, Cooper. He was a feisty 4-year-old with mitochondrial depletion syndrome.  I began looking after him as an infant when he wouldn’t stop screaming.  I saw him through surgeries, diagnostic rabbit trails, and ultimately helped with the painful decision to undergo small bowel transplantation.  Inexplicable symptoms and strange complications defined his short life.  While he spent his final days in considerable pain, his lucid moments were spent throwing marshmallows at his siblings.  It sort of encapsulates who he was.  Great spirit.

Independent of the circumstances, a child’s death is always brutally difficult to process.  It’s counterintuitive.  And facing Cooper’s parents for the first time after his passing was strangely difficult for me.  When he was alive I always had a plan.  Every sign, symptom, and problem had a systematic approach.  But when faced with the most inconceivable process, I found myself awkwardly at odds with how to handle the dialog.  In a hospital my calculated clinical role has a way of sheltering me from a parent’s reality.  At a funeral it’s different.

Patients like Cooper offer the most unusual landscape for thinking.  They force us to look at what we’ve done and more importantly what we failed to do. At Cooper’s memorial service yesterday, Father Gerald Sevick‘s quote of Isaiah 11:16 was timely for me: And a child will lead them.  These children teach us.  And when you look at these experiences in just the right way, they represent a unique gift.

Disney interviewed me in 2007 in a feature piece on colic.  Pictured above with his mother Sarah, Coop was one of our models.


{ 16 comments }

Erin March 9, 2011 at 11:15 pm

This is your most beautiful post, DrV. Sarah (and Cooper!) were so blessed to have you caring for them and their child. Cooper’s death is very sad, it was really difficult to read your account as a doctor in charge of his care, but in the event of his death, you can rest assured that you worked as hard as you possibly could to be there for him in his time of need, and I can’t think of one person who would say otherwise.

You’re a gem, DrV. Thanks for your hard work and dedication to your profession.

Sarah Knight March 9, 2011 at 11:31 pm

It meant so much for you to be there Dr. V. You will always be dear to our hearts. Your care for Cooper throughout all of his years was amazing. Kevin and I cannot thank you enough for always being there during our hardest moments.

Jody March 10, 2011 at 4:08 am

From the mother of a transplanted child… Thank you for stepping into our side of this challenging life, even if only briefly. I often wonder if doctors would make the same decisions if they lived in the parents’ role for just a little while. Again, thank you. Your willingness to step inside the personal world of chronically Ill children is appreciated.

Daiquiri Saenz March 10, 2011 at 7:09 am

Dr.V your post is very comforting. The knight family is amazing! Thank you for posting your prospective it’s so nice and comforting to know that Cooper had great doctors.

Kristi March 10, 2011 at 7:52 am

Dr V-
You put that so eloquently. I am so sad I was unable to attend his service yesterday. You are correct “A child will lead them.” We are so incredibly blessed to have a jobs in which our lives are touched by so many awesome kids!

Greg Matthews March 10, 2011 at 9:52 am

Dr. V, thanks so much for this post. I’m so grateful that there are physicians who care so deeply for, and invest so deeply in, your patients. And my heart goes out to Cooper’s parents and family … God bless you all.
Gm

Michael Moore March 10, 2011 at 10:25 am

Thank you Dr. V…an amazing post…my wife (and I) lost a patient diagnosed with neuroblastoma during her intern year, and she passed the day before my wife graduated from her Peds residency. That patient and her family taught us so many things, and we were truly blessed to have her in our life. Thanks for posting this.

Wendy Sue Swanson, MD March 10, 2011 at 10:38 am

Thanks, Bryan, for sharing this story. I’m so sorry for your loss and so pleased you found fellowship in Cooper’s family, in Cooper, in the challenge of always bettering yourself to understand, and in those inspiring words. Will be thinking of you all today…

Monique March 10, 2011 at 10:41 am

Very well put. Cooper was truly a gift and such a special child and he was equally blessed to have such amazing parents in Sarah and Kevin and an amazing, caring Doctor in you.

Debbie March 10, 2011 at 11:06 am

A touching account from the other side of the bed. Thank you.

Cheryl Handy March 10, 2011 at 11:18 am

Amazing post Dr Bryan. My prayers and condolences to the family, friends, medical team, caregivers who were privileged/blessed to have this child in their lives if only for a very short time.

Thank God for men like you and children like Cooper. Both strong and brave human beings that make a good team and from whom we all gain strength and wisdom.

May God hold Cooper and the parents closely during this difficult time.

Jackie Fox March 10, 2011 at 11:38 am

I am so sorry for the Knight family’s loss, and for yours. Cooper sounds like an amazing little boy. I hope the angels are dodging marshmallows right about now.

Marie March 11, 2011 at 4:53 am

What a tender, touching post. I’ve read Sarah’s blog because of her experience w/ mito. Two of my kids died in infancy, and others of mine have symptoms that mainly get lumped into “possible mito.” we don’t know, though. I often wonder if any of the kids’ doctors really care(d), or just too busy doing their job. Beautiful post to remember Cooper. I wish my 2 who died could have had longer to present more of a picture to help us understand, of course selfishly on my part because i’d have liked to have even celebrated Christmas or a birthday with them. No amount of time is long enough when it’s cut short, though. It seems ironic I read this post abt a doctor in TX because when neurology told us they’d done all they could think of to help us get answers, they suggested we go to TX or CA or Atlanta or Boston for a 2nd opinion. Many of our tests were sent to Baylor, and just today, though the suggestion was made more than a year ago, we were discussing if it’s time to make the trip. I wish I had more confidence that all doctors were not only skilled and professional, but caring and concerned beyond the time spent in office or hospitals with patients. But my experience has taught me you are a real blessing for families like Coopers for being extraordinary, and making your work more than a job. Thank you for this kind example for your peers. Thank you for giving me some hope in the medical community again, after so many experiences have left me cynical about the clinical and cold “care” often provided.

Susan Imle Bollfrass March 11, 2011 at 2:47 pm

Dear Dr. V,

As Cooper’s grandmother “Mei” I am deeply touched by your beautiful words and tribute to our Cooper. You have traveled with Cooper on his earthly journey from the time he was born, and you have worked tirelessly to help Cooper and to search for solutions to his multitude of problems. You have truly Blessed Cooper’s life.

As I worked to raise money for Cooper’s COTA campaign and to bring awareness to our community, it soon bcame apparent to me that Cooper was a very special little boy. People were drawn to him. Perhaps it was his delightful sense of humor, his amazing courage, his contagious laugh, his incredible zest for life or the way he loved people, but for what ever the reason, Cooper brought a beautiful Light with him every where he went. Cooper did more in his four years than many of us can only dream to achieve because Cooper softened hardened hearts, he caused people to turn to prayer and he changed countless lives and brought goodness and love out of everyone whose lives he touched. Cooper was a gift and he was a Miracle. To be Cooper’s “Mei” is truly an honor!

I will always hold you in high regard and will be forever grateful to you for all that you have done to help Cooper.

With gratitude,

Susan Bollfrass…..Cooper’s Mei

Melissa (aka DrSnit) March 16, 2011 at 10:36 pm

What a beautiful, loving post. Thank you for sharing this with us. And thank you for existing. Through your work Cooper’s parents got to have him around. I’m sorry for your loss and for Cooper’s parent’s loss.

Life is so full of pain and beauty and love. We’re all in this together.
x
Melissa

Sheri Perl March 19, 2011 at 9:03 am

It’s agonizing to lose a child. I lost my son Danny on July 1, 2008 to an overdose. He was 22. In dedication to him I formed The Prayer Registry for parents who have lost children.

This free website service is dedicated to all of the families who have lost children, whatever age that child was when they passed. This site registers the anniversary day of our children’s crossing. The members of this online community, the Prayer Team, have the opportunity to honor their child’s legacy and connect with other bereaved parents to participate in world-wide group prayer for every registered loved one on the anniversary day of their passing. To learn more see my website: http://www.sheriperl.com.

To register a child for prayer, email Sheri at theprayerregistry@gmail.com. I need only your child’s full name along with the date that he or she passed to ensure that your child receives prayer every year on the anniversary day of his or her passing.

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