Special Children, Special Families, Special Needs

(From the April 2018 Issue of MedStat)

Written by Maureen Kollar, DO

Dr. Maureen Kollar is a pediatrician with Hand in Hand Pediatrics in Dublin. She received her medical degree from the Ohio University College of Medicine and completed her pediatric residency at Doctors Hospital. She has been on the medical staff at Nationwide Children's Hospital since 1991.

Most parents anticipate a perfect child from birth, a healthy child that has the potential to be the smartest, kindest, most attractive child in the world. We all know that is not the case for every child and family. Parents are devastated when their dream does not come true, and they grieve the death of the “perfect child.” More importantly, parents are desperate to make their children whole again. That is a parent’s job – to keep his/her child safe and healthy.

Parents go through most of the stages of grief during this time. Their child is suffering. Economics becomes a factor. They need to figure out new work schedules. Equipment needs to be ordered. Nursing care must be arranged. Specialist appointments need to be scheduled. And, the family must learn about the child’s disease, a crash course in medicine, just to learn how to take care of them. We can’t forget the rest of the family. It is very easy to concentrate so much on the child with special needs, that the healthier children in the family take a back seat. They still need love and attention. It quickly becomes an overwhelming family affair. That’s when they turn to the primary care pediatrician.

When parents reach the acceptance stage of their grief, they become driven to search for the cure. They search the web for answers. There are family support sites where families exchange ideas – information on equipment, doctors, supplements, medications, and research studies. The next step is often giving all that information to you to decipher. They expect you to take those things seriously and filter the information. However, often parents think they have found the cure. (It was on the internet!)

As a primary care pediatrician, my first special needs patient overwhelmed me. I was under the impression I was there to meet all the needs of my patients myself. After the realization of how much I did not know or understand, I went into a panic mode. Here were parents sitting on the edge of their seat waiting for me to announce I had the cure for their child’s problems.

As physicians, we must be aware of our own biases toward chronic illness. It can creep into the advice we give to the family, leading to inappropriate care. Our responsibility is to give a realistic view of their child’s future but sometimes also to supply hope for the family. What are the parents’ desires for their child’s treatment? What is the ability of the parent to care for the child? In some cases, when the desires of the family conflict with medical professionals, we need to advocate for the family. We may need to get second opinions outside the geographic area to help parents understand the whole situation. The end-of-life-needs of the patient often come into play as well. There are frequently misconceptions concerning Palliative Care and Hospice. Understanding end-of-life care helps guide patients/parents to make the right decisions. If we feel unable to aid the family in their vision for their child’s care, for whatever reason, we should offer to refer the patient to another health care professional.

Our role, as I see it, in the care of the special child, is that of navigator, coordinator, listener, interpreter, and caring health professional. We help navigate the parents through their grief stages by listening and showing empathy. We coordinate care for the specialists and needed services. Understanding treatment plans from referrals is important. Many times, parents call or make a follow-up visit after a specialist’s visit to have us interpret/explain the plan to them. Parents have tremendous faith in the pediatrician and sometimes consider us all knowing, even on things beyond our basic understanding of the condition(s) which afflicted their child.

It is very easy to get pulled into the frenzy to search for the cure! Whereas you will give your best, it can become all-encompassing. It would be great if we could just Google the cure for all the illnesses that afflict our patients, but unfortunately, there are still many unknowns. Your job as a primary care pediatrician is to give the care that is within your scope of practice. So be aware of your limitations of time and experience.

How do you accomplish all this and still meet the needs of your other patients?

Medicine has thankfully changed in the years since my introduction to my first special needs family. We are now fortunate to have access to specialists all over the world. Even better, there are teams of professionals located just around the corner. Coordinating care is best done by those individuals who have the appropriate training. Keeping a full patient schedule, then trying to meet all the needs of your special care patients, is not efficient for you or your special needs family. Nationwide Children’s Hospital has Palliative CareHospiceHome Health Care, and all the different therapies are available to aid you in the care of your patient. They understand the family’s predicament and often will be able to connect the family with even more helpful agencies or support groups that you did not even know existed.

Taking care of our special needs population is rewarding. Taking advantage of all the resources available to us through Nationwide Children’s Hospital is smart!

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