BY BLYTH LORD

Mercifully, serious illness in children is rare. But it happens. If you’re reading this post, you KNOW it happens. And pediatricians are often the very first line of medical provider that receives the diagnosis with the family. They are also the medical provider that typically knows the family best, at least up to that point. They may have been working with the family for years already because of previous children, or in the months/years prior to the diagnosis. Pediatricians are also especially well positioned to stay with the family during the child’s illness journey because they are oriented towards family-centered care and are child and family-focused, not disease-oriented. They find joy and meaning in the relationships. Their goal is child and family wellness, and wellness can take many forms, including alongside serious illness.

CPN hopes that your pediatrician is available to you in some capacity during your child’s illness journey: to help you understand what the subspecialists are saying, to help you understand away from the hospitals and the urgency of an acute worsening of disease what it is you want for your child, what your hopes are. We hope that you, like Casey below, will be able to communicate with them all along the way, and that they help you identify and follow your goals of care for your child.

From Casey Bolton Pounds

When my youngest daughter, Annabel, was diagnosed with a fatal, incurable genetic disorder, I was fortunate to connect with a small community of other parents whose children had similar diagnoses.  One of the many great pieces of advice I received was to get palliative care and/or hospice lined up sooner rather than later.  The definition of “palliate” is to make a disease or its symptoms less severe or unpleasant without removing the cause.  It is not curative care, rather it is comfort care, and it’s for any patient with a serious illness from the point of diagnosis going forward.  Its focus is on relief from pain and symptoms associated with the disease, with the ultimate goal being to maximize the person’s quality of life and to help the person and family realize their goals of care.  Of equal importance, palliative care also provides psychosocial and emotional support to not only the patient but also the family, including siblings – support from social workers, child-life specialists, music therapists.

Because we knew we wanted to include palliative care in our daughter’s treatment, I never hesitated to find it for her, which I did through our local pediatric hospice. Part of this journey involved my husband and I thinking together about what our “Philosophy of Care” was for Annabel:  how do we intend to treat her medically for the time she is with us?  We have decided that we are not interested in life-extending interventions such as feeding tubes and that we want to avoid hospitalizations and treat her at home for infections, seizures, etc.  We will do anything and everything to make Annabel comfortable, but with all of the wonderful advances in modern medicine, none of them can cure her.  She has a terminal illness, and all the interventions in the world won’t change that.  Believe me, that is a hard decision to make, and one that is very personal and unique to every family.  No one is right, no one is wrong.

I knew I needed to share our Philosophy of Care with our pediatrician and have a conversation with her about her participation in Annabel’s care.  Dr. Wells has been our pediatrician since our oldest daughter was born in early 2010.  She knows our family well, and we trust her.  In fact, she was the first one to notice something wasn’t quite right with Annabel, even before I did, and, while never alarming me, she never blew it off as inconsequential.

I had been quite surprised to hear from several people in our disease group’s community that their pediatricians had bailed on them after diagnosis.  Apparently, it’s not so very uncommon.  I suppose some pediatricians thought that going into general pediatric practice would mean vaccinations and runny noses, not dying babies.  So at Annabel’s most recent “well-child” visit, I gingerly broached the subject.

To my relief, Dr. Wells assured me that she is 100% behind us, and I was pleased to hear that she supported the decisions we had made.  She made it clear to me in our conversation that her main goal in treating our daughter was going to be optimizing her quality of life in whatever ways possible.  She explained that she has treated patients like Annabel before and has always felt that this type of work was very near and dear to her.  She was moved early in her career when, as a resident, she diagnosed and treated a medically complex, terminally ill child.

To my surprise, she also told me that she had talked with her nurses about Annabel and how important, albeit difficult, caring for her would be and that they would never forget her or this experience.  I am sure she’s right, and I’m grateful she did that.  This situation is definitely not for the faint of heart, and we need to know that everyone on the care team is all in, so to speak.

I am so glad I was proactive and sought out palliative care. I am so glad that I had the conversation with our daughter’s pediatrician. And I am so glad she is on board. We have since had this same discussion with Annabel’s neurologist, as well as her hospice nurse, so that everyone on the team knows our plans and is willing and able to help us carry out those plans.  At this point in time, it’s hard for me to really designate a team leader, but they have all assured me that we are in fact a team and that they will all work together to give Annabel the best care possible.

Depending on the patient, the disease, the location, and many other factors, everyone’s care team will look a little different.  But I believe the bottom line is still the same: if your pediatrician (or specialists, nurses, etc.) cannot or will not stick with and support you in your goals of care for your child, find one who will.  Believe me, they’re out there.