Research that Benefits Children and Families-An Uplifting Story

I have decided to share a personal story as a parent about relying on research and a medical professional’s knowledge in research to make a life changing decision for my son.  My son was born 28 weeks premature and was on a high-frequency air ventilator for about two months after birth.  A major side effect from using the high-pressured ventilators is eye damage, to muscles and retinas specifically.  Soon as the doctors had to make the decision to put my son on the ventilator I had to sign a waiver acknowledging this could happen.  At that moment, vision or breathing was the question at hand…I chose breathing.  My son was visited by an ophthalmologist regularly while he was in the NICU to observe his retina development.  Luckily, we were sent home after three months and he had no retina damage.  We had a follow-up appointment a year from then to reassess his eye development.

            However, after a couple months we noticed our son never looked at us with both of his eyes and was not developing properly in physical and social development.  With my professional background these were red flags for me and I was demanding assessments to be done to figure out what was happening with his vision.  Both of his eyes seemed to be lazy and working independently at the same time.  We took various pictures to show doctors of his “lazy eye” switching between the two eyes.  Our son received Early On services with home visits where I was coached how to aid him in physical development without the ability to see essentially.  I learned tricks to make him feel around his surroundings and use barriers to make him feel safe.  All these things were taking place when my son was about six months old.

            At his six-month wellness appointment, I requested a referral to see the ophthalmologist sooner that his annual appointment.  It took two months to get an appointment with the doctor, the specialists was a well-known and is still highly demanded in the area.  We learned that my son did indeed have two lazy eyes that were independently working, called Alternating Strabismus.  This is the best and worst-case scenario for an infant/toddler.  When alternating, both eyes are connecting to the brain and forming important life-long neuro connections necessary for depth perception and future academic demands.  Unfortunately, the only cure to align the eyes in this case is surgery.  An eye patch on one eye would cause the brain to stop listening to the eye that is no longer giving input and glasses cannot aid two independently working eyes, only one lazy eye.

            This was difficult information to receive as a parent.  We already had a fragile first eight months with our child and did not feel comfortable putting our son at risk.  The ophthalmologist, Dr. Richard Heckert, assured us with research-based information about the surgery itself and his own performances.  He explained to us the risks and procedures that would take place.  We also discussed what the results would be immediately afterwards and into the future.  As the parent, getting all the information about the research that had been done on the procedure made me confident surgery was the right choice, even with the risks presented.

            My son had a successful surgery.  He was able to see our faces immediately after he woke up and smiled at us.  It was just unbelievable!  His development went into warp speed once he had vision to drive it.  He went from barely rolling over at 9 months to crawling and sitting up at a year old and walking at a year and a half.  We follow up with the ophthalmologist every three months for alignment checkups and will continue to do so while he is in the critical window of brain development in the first five years.  It has been three years since the surgery.  Our son wears glasses now to prevent any more turning in his eyes and will most likely require another surgery in the future to adjust a different aspect of his alignment than what was repaired previously.  We were aware that this would be the results of the procedure and are still confident it was the right decision to make, even with the risks that were presented for my son.

            I found an article in the Walden Library that features Dr. Jeffrey Leen, a leading New York pediatric and strabismus surgeon, who discusses how he prepares parents and patients with research and information about the procedures that will need to be done.  He comments on the support he provides:

"Perhaps above all other things, parents wish to know that their child is in good hands and will feel at ease with the surgical team," said Dr. Leen, who performs all of the surgeries himself, without the use of medical students or residents. Location also plays a significant role in parents' level of comfort. "I choose Nyack Hospital because they perform a high volume of pediatric surgeries compared to other facilities in this area. The nurses and anesthesiologists are not only highly experienced in caring for children, but they truly enjoy the unique challenges it presents." (PR Newswire, 2011).

            Dr. Leen acknowledges that surgeries can have risk factors and can be prevented or minimized with strategic planning, appropriate patient selection and providing realistic expectations to parents (PR Newswire, 2011).  I have included a link to the article from Dr. Leen, some personal photographs of my son, and a review page of the doctor that performed my son’s procedure.  Hope you find it interesting, I learned a lot through this process as a parent and early childhood professional.

Before Surgery

After Surgery

 

 Three Years Later

Dr. Richard Heckert, MD Pediatric Ophthalmologist Specialist

BayCare Clinic, Green Bay, WI

https://www.healthgrades.com/physician/dr-richard-heckert-yy5k2

PR Newswire. (2011). New York (NY) Pediatric Ophthalmology Specialist Dr. Jeffrey Leen of Rockland Eye Physicians Attests to the Safety of Strabismus Surgery in Young Children. Retreived from https://eds-a-ebscohost-com.ezp.waldenulibrary.org/eds/detail/detail?vid=4&sid=d5612f4c-506a-4de0-b7ee-96fb9e95a910%40sessionmgr4009&bdata=JnNpdGU9ZWRzLWxpdmUmc2NvcGU9c2l0ZQ%3d%3d#db=bwh&AN=201108051532PR.NEWS.USPR.NY48199