Why Parent Empowerment is Key: A Story for Pediatricians and Providers

The following is a guest post from www.preemieworld.com written be CEO, Deb Discenza

As a NICU team worked to keep my 30-weeker preemie daughter Becky alive in her 38-day stay in the Neonatal Intensive Care Unit (NICU), I find myself struggling with so many emotions.  Intermixed with guilt was extreme pride in my daughter fighting the good fight but also a huge amount of fear.  Would she make it home?  If she did, would she walk?  Would she talk?  Would she have a normal life?

That was 2003 but I remember this like it was yesterday. 13.5 years later I have watched my daughter work through numerous diagnoses, get tons of therapy and more.  This did not unfold as I would have expected it to, with the pediatrician running developmental checks and making suggestions.  The reality is, my kid tended to run under the radar on so many levels. She compensated beautifully but to this Mom’s eye – something was not right.  I ended up focusing on the pediatrician as a link to resources but I made sure that I was the one vocalizing any concerns and making it incredibly clear I wanted help.  Even then, I found that unless the doctor was familiar with a particular condition, it was not something that he was really eager to focus upon.

So while you think that the Pediatrician is going to be your go-to for developmental checks, let me warn you otherwise.  This is just not the case.  Pediatricians are generalists which means that they are there to make sure your baby is doing well in “general” terms.  They have so many checklists to check for various issues health-wise/development-wise that everything happens in a very hurried fashion.

So who is key to your child’s development?  YOU.  You are key.  You are around your child more often than anyone else and you pick up on things that seem off, am I right?  Yes.  Listen to your gut instinct, listen to your inner voice. It will not fail you.  And by all means act on any concerns . . . now.

So what happened with my daughter?  Here is a quick timeline:

• In the NICU for 38 days and came home on medical equipment.  Did not qualify for Early Intervention based on our state’s guidelines for severity of delay.  On the discharge paperwork were two options:  1) Local Health Department Infant Monitoring Program and 2) NICU Follow-Up Program.  I signed my daughter up for both.
• At 18 months the health department team suggested we get our daughter evaluated by Early Intervention. She was not walking, barely talking, and had a major feeding issue.  She got into Early Intervention at 19 months old and had speech, occupational therapy and physical therapy throughout 7 months and was then discharged.
• At 32 months, and prior to preschool I had Early Intervention out again for an evaluation to see if there were any other issues to be aware of before her 3rd birthday.  She got the all-clear.
• At age 3, Becky entered preschool and at my repeated request to her teacher I asked that she be “proactive and not reactive” if there were any concerns because Becky was a premature baby. She told me not to worry and that all preemies catch up by age 2.  I repeated my request again and she heard me out.
• At Becky’s first preschool parent/teacher conference 6 weeks later, the teacher walked into the room and started our conference with “You obviously know more about this than I do.” She proceeded to tell us our daughter was not speaking in class and suggested we reach out to ChildFind Preschool for an evaluation.  I was so grateful she had heard me.
• Months later Becky was given a label of Developmental Delay and had a Preschool Resource Teacher assigned to her case through the rest of preschool.  She had an Individualized Education Plan (IEP) from here forward.
• As my daughter transitioned into Kindergarten I met with the elementary school’s IEP team.  With 10 people around the table, I told them that I felt my daughter was doing well in Kindergarten but that something wasn’t right. I went on to explain numerous challenges and the team heard me out.  It was the school psychologist who responded with, “Does she look you in the eye?”  I was stunned.  Yes, she did look me in the eye.  However, apparently she did not look anyone else in the eye.  After testing by the school and a neuropsychologist, Becky was diagnosed with Autism Spectrum Disorder (ASD) and her new IEP reflected that.
• In 2nd Grade at a well-check appointment with the pediatrician, I pushed for an ADHD discussion.  The pediatrician had experience in this area and heard me out.  He felt that we needed a couple of appointments to settle a diagnosis.  With one appointment, he quickly diagnosed her and I walked out with a prescription to trial on our daughter.
• In 3rd Grade, I felt that something still wasn’t right and decided it was time to take my daughter to a Developmental Pediatrician to make sure we had not missed anything.  Becky’s gross motor skills had always been a little off.  We walked out of that appointment with a diagnosis of Developmental Motor Coordination Disorder (DCD).  Becky entered a year of therapy for that plus sensory issues.
• In 5th Grade and in having my daughter work out with a personal trainer for ongoing physical fitness and overall coordination, I noticed during one session that her ankles were reacting kind oddy on the elliptical machine.  The trainer suggested orthotics and ultimately we ended up at an Orthopedic Surgeon for a prescription.  These helped and we moved on from there.  While at the appointment I specifically asked the doctor about the potential for my daughter to actually have Cerebral Palsy (CP).  The doctor looked at her walk and run and heard me out.  She said that it is possible but that if it was CP it was very mild.  No diagnosis, no treatment.  We moved on from there.
• This year, in 7th grade, I had to take Becky back to the Orthopedic Surgeon for a re-scrip of the orthotics.  I didn’t think twice about asking again because I assume there were no more concerns.  The doctor had Becky do the usual routine of walking up and down the hallway barefoot and then running down the hallway.  Her run had actually gotten worse.  As the doctor had Becky sit on the examination table and check my daughter’s range of motion, she asked me all sorts of questions about Becky’s premature birth and the NICU stay as well as development.  She then flexed one of Becky’s feet and said, “See her foot lock up?  That is spasticity.”  I nearly choked as I said “So are we now diagnosing …?”  She said yes.  We walked out of the office with a diagnosis of mild spastic diplegia.  My daughter is currently undergoing Physical Therapy, about to start night braces and if that doesn’t work there could be serial casting, Botox injections, and heel cord surgery in her future.

Supporting families as I do on the Inspire Preemie Community (https://preemie.inspire.com) tens of thousands of parents worldwide, my story is not uncommon.  BabyNoggin will give you the tools you need to assess your baby’s development in private ongoing and help you walk into the doctor’s office with confidence as you request assistance with referrals and more.

How is Becky doing today?  With all of that therapy, my daughter is doing extremely well in school, has friends and is thriving on many levels.  This did not come easy.  But it started with my starting to trust my instinct and to start asking questions and doing my research.