Preemies Should Not Be Left Behind

Deb Kangaroo’ing Becky in the NICU

by Deb Discenza, PreemieWorld

Everyday as the Leader of the Inspire Preemie Community I talk about trusting one’s gut when it comes to a preemie’s challenges either medical, developmental or educational. I impart that lesson with street cred that can only come from being there and doing that. I was that parent and I struggled, too. I still do. But I am, as an artist often is, observant and watchful. I took in my lovely daughter and her obstacles with clarity and slowly but surely learned to speak up and speak out loudly. Prior to that I would second-guess myself when doctors and specialists did not feel something was a problem and then back off my concerns. But the universe was sending me a different set of signals and never stopped. Now I know that it was because I knew way more than I realized despite being that first-time mother, scared to second-guess the supposed experts. Becky’s story is one that I share with you now because it is every preemie parent’s story. And now more than ever it is crucial to step up and speak loudly because our children and many generations of preemies are being left behind.

Something was Wrong
It was early September I was out of the immediate area with family, afraid and alone as I stumbled from a grocery store bathroom and trying not to leak amniotic fluid all over the floor. Only minutes before in the bathroom I was crying, hysterical and apologizing to my unborn daughter. As I squished my way up to the front office, I shook with the realization that I was just barely 30 weeks along in my pregnancy with my daughter, Becky. It wasn’t time yet. Something was wrong. Very wrong. As I questioned the two front office ladies about the nearest hospital and then about making a long-distance call to my obstetrician, I was suddenly calm. With swift precision, I was now in crisis mode.

Within the hour, my husband had transported me and a number of relatives with us for the weekend outing, at the speed of light to the hospital. On the way my doctor in returning my on-call message and sounding slightly annoyed, said, “Well, come on in and we’ll see if you are really in labor.” All the while I was gushing fluid all over the passenger seat of the car and trying to calmly ask my sister-in-law about labor and delivery. That’s right, I had never even got to Lamaze classes let alone a baby shower. We were supposed to go to the hospital maternity tour within the week but it appeared Becky wanted the live tour as 30 hours after arrival and despite every intervention possible I gave birth to our 2 lb. 15.5 oz preemie girl at 11:50 p.m. on Grandparents Day. We were thrilled and relieved to hear her tiny, but seriously pissed off first cry. My husband Gregg laughed and cried and I breathed a sigh of relief and smiled. Becky headed off to the NICU with my husband in tow and later on I was rolled into the NICU to visit prior to being sent to my room.

The NICU Stay
My introduction to the NICU had me instantly assaulted with the image of my daughter hooked up to a lot of medical equipment with her nurse hovering nearby and the monitor alarms pinging like crazy. Our journey was supposed to be a smooth one due to her being born at 30 weeks, right? Well, it was anything but simple with Becky’s rollercoaster ride taking us on a journey that managed everything from serious heart defects and the threat of surgery to horrible reflux that wreaked havoc with breathing, eating and later to the need for her first blood transfusion. The final straw that nearly broke me was her contracting a nasty case of sepsis that had my husband and I wondering if we would be lucky enough to bring her home. Thankfully she recovered. And in the end we felt fortunate because we *only* had a 38-day stay in the NICU before she came home on oxygen and a monitor and with a whole team of specialists. She landed herself back in the hospital 5 days later with major feeding issues that once resolved started her down the path toward flourishing in our care. We tried to take all of this in stride but it was hard.

From day one in the NICU I had sat by and watched everything through a haze of exhaustion and stress. Inside I was drowning in guilt, shame and fear. I was scared of the future. As I stood at my daughter’s incubator I silently wondered to myself, “What have I done? Will she walk? Will she talk? Will she be able to go to school?” The doctors and nurses again continued to tell us she was doing well, but my brain was sending me secret pings of something isn’t right. I tried to ignore it and instead focus harder on the NICU team, then the pediatrician and health department team that monitored her development at our request. Those pings never went away. Ever.

Becky did not qualify for Early Intervention out of the NICU. Her single cranial ultrasound had been clear and the team did not see a need for any follow-ups nor any referrals to specialists. It was the in the notes of my daughter’s NICU discharge paperwork that I saw an “optional” resource in the form of our local Health Department. In contacting them, I signed up our daughter to be monitored by their Infant Monitoring Program. A social worker would come out each month to check on Becky and every quarter she would bring the clinic’s physical therapist with her for a developmental evaluation though it was likely she wouldn’t qualify for services. Meanwhile it was wintertime and my husband and I were trying to figure out what we could do to stimulate our daughter and let her have playtime in an environment where crawling was okay instead of walking. We took her to the local kid’s gym, My Gym and enrolled her in a class there. She enjoyed the sensory input of that colorful, stimulating environment.

Over time the delays appeared to widen and prior to the 18-month mark, the monitoring team suggested we get her evaluated by the local Early Intervention (EI) program. So after a 10-person team of therapeutic professionals invaded our house to evaluate Becky, she was pulled into the program immediately. We were instantly involved in Occupational Therapy (OT), Physical Therapy (PT) and Speech Therapy (ST) because our daughter had struggles in gross motor, fine motor, speech and feeding skills and within that were sensory processing difficulties. Upon hearing she qualified I went into a state of shock. It was then that I quickly realized that Becky may have been discharged from the NICU but we had never truly left that space of struggle and challenge. We were still in the thick of things.

Becky’s EI program went very well and she responded to everything really fast. Within 7 months she thrived enough to get kicked out of every single therapy program and we were elated. We felt this was a good sign but yet my brain kept telling me that this wasn’t over at all. We continued My Gym classes for her and even doubled them up to keep things moving ahead.

By preschool Becky was thriving and had an all-clear check by the EI team to go ahead with school at 3 years old. Well, the teacher, thankfully heard me out at the home visit prior to school starting when I made it clear that Becky’s premature birth was a signal that we needed to be proactive and not reactive to any concerns. The teacher threw out the well-worn preemie myth that “all premature infants catch-up by age two.” I repeated my statement again and this time with emphasis. I was no longer that agreeable mother, I was now well on my way to becoming a strong advocate for my daughter. She heard me. By the first parent-teacher conference weeks after school starting, the teacher walked into the room stating, “You obviously know more about this than I do.” I was grateful, but at the same time my heart sank. Becky was not talking in class and the teacher noted that there may be many reasons as to why that was occurring. The teacher urged us to get her evaluated by ChildFind Preschool and to do it soon. We did so and not too long after Becky had her first Individualized Education Plan (IEP) set up and was receiving services in the classroom in what ended up not being help in speech but rather gross motor and fine motor skills catch-up. The IEP carried through all of preschool including an extra year we gave Becky prior to Kindergarten to get her truly ready for elementary school.

Kindergarten & a Diagnosis #1
Shortly after Kindergarten started, I met with my daughter’s IEP team. As I entered the elementary school conference room I saw the familiar sight of a large team ready to talk about Becky. I swallowed hard at this and nervously took my seat. Were we going to be going to these types of meetings for the rest of her school career? The team began asking me about Becky and how I thought she was doing in school. I told them that I felt she was transitioning into school fairly well but that my brain kept telling me something wasn’t right. After giving the team a background in Becky’s birth and life so far, I noted that things just didn’t add up with her skills sets and her being so bright (she started reading at age 2 and by this point was already reading high-level science texts on astronomy and chemistry). The school psychologist then noted directly, “Does she look you in the eye?” I was stunned. I mean, stunned. “Yes, she does,” I replied emphatically but swallowing my rising fear. Autism? They are thinking autism now? No one ever talked about autism before now. Why now? I was trying to keep from losing it at the meeting. Fast forward, we had a diagnosis of Asperger’s from the school a short time later post-testing. A neuropsychology evaluation that spring confirmed it and all the while I was again in shock. Tears came easily and I felt like I was watching my daughter’s future slip away from us. We swallowed hard yet again and got her therapies left and right. We watched as Becky struggled with making friends. She would talk to us endlessly but when it came to her peers she seemed to think that they needed a lecture on her special interests rather than the give and take of everyday conversation. It was heartbreaking beyond words. What would her future be like? How could we help her? Diligently, we worked hard to bring our daughter back into our world and it did happen bit by bit.

2nd Grade & Another Diagnosis
By second grade, we were a well-oiled machine in terms of therapy programs. Things were running fairly smoothly. Yet again my brain went something isn’t right. Becky’s attention span was off and I had mentioned it to the pediatrician at a previous well-check without much response. This time I was extremely vocal that we needed to evaluate her for Attention Deficit Hyperactivity Disorder (ADHD). The doctor listened and we set up a separate appointment since he had an interest in that area and could manage her care. Apparently it normally takes two appointments with the pediatrician to do a full evaluation. I ended up walking out of the first appointment with a prescription. Over the next few years we spent time evaluating medications and finally settled on two drugs, a stimulant and a non-stimulant to help her combat side effects and get the most benefit during school time and homework time.

3rd Grade & Concerns & a Diagnosis???
In late second grade, Becky tested off the charts on a cognitive test and got into the local advanced academic school program. I told her to go and try the new school because I suspected she would find friends there. She did and she thrived beyond my wildest dreams as she found her tribe, a number of kids who were just like her. Yet as we worked with the special education team for accommodations I found myself wondering if there weren’t any other challenges that we had not yet figured out. I was tired of finding things out along the way so I took Becky to a Developmental Pediatrician. There, I asked the doctor about her gross motor skills and if there were concerns. She felt Becky had Developmental Motor Coordination Disorder (DCD) and recommended occupational therapy. We did that for a while and then got to the point where Becky just needed to be a kid. Yet my brain was still sending me those pings. Something still wasn’t right.

Feeding Therapy at 12 Years Old
In tackling the health issues and the deaths of both of my parents for most of Becky’s life, it was now at around 12 years old that I sat Becky down to discuss her extreme food preferences. When I mean extreme, I mean, rice and noodles and the occasional chicken nugget from McDonald’s and only cheese pizza with light sauce from Papa John’s Pizza. She was going to end up losing those hard-won friends over this and I knew it. I made it clear that it was time to go into one-on-one feeding therapy and she agreed. After researching large feeding programs and deciding this was not the way to go for a girl that was willing to try, I zeroed in on a pediatric feeding specialist with a focus on sensory issues. We hit the jackpot and over one summer with efforts in therapy sessions and with moving to really fresh ingredients we suddenly had a child with a vastly improved diet. Through Becky’s entire infancy and childhood, no one ever truly heard me out on the feeding issues. Ever.

7th Grade, Yes – 7th Grade & a Correction + Yet Another Diagnosis
In 5th grade I had taken Becky to an orthopaedic surgeon for prescription orthotics. During her workouts we had with a personal trainer to keep her moving, I had noticed her ankles were kind of “squishy” and even the trainer thought it was odd. At the doctor’s office I point-blank asked the doctor, “Is this possibly Cerebral Palsy instead of DCD?” She replied, “It could be but if it is, it is really, really, really mild.” We got the prescription for the orthotics and that was that. No suggestions, no treatment, no diagnosis. This past February, we went back and saw a newer doctor in the practice for the re-prescription and she had Becky do the usual walking and running up and down the office hallway. But this time she started peppering me with questions about Becky’s birth, about challenges with development, with muscle tone. I was completely unprepared for this and answered shakily and with a rising dread. She then had Becky sit on the exam table and manipulated her legs and ankles one by one. One ankle, she noted, “See that? That’s spasticity.” My eyes bugged out as I said, “Is this what I think it is? Are you diagnosing her with . . . ?” “Yes,” the doctor said, “Mild Spastic Diplegia, Cerebral Palsy.” I was shaking with shock. Becky asked what this meant and suddenly I was confronted with my teenage daughter asking me questions about what this meant for her. I was mortified but worked hard to focus on her and her needs and asking the doctor about treatments. We walked out that day with a prescription for Physical Therapy and a plan that included night braces (also known as night splints), daily stretches, and would evolve as needed into Botox injections and serial casting and likely, heel cord surgery.

The next month I was numb yet trying to reach out to people in the field that I knew could assist me with some input. I quickly came to realize that the clear ultrasound wasn’t a final defining point for Becky in the NICU, that timing of it could been at the wrong point and that a follow-up scan would likely found the brain damage that has resulted. We may never know what happened but one thing is for sure – Becky is on a slippery slope to try and get caught up on this challenge. Add to that, Cerebral Palsy is a murky path with treatments that don’t always work, have side effects and are quite frankly, outdated. To hear that CP research has been lagging is disheartening at best though there is hope in that a new wave of research on the horizon.

Becky started PT and did well and to this date is still working on stretching those heel cords. However, we ended up switch from the Orthopaedic Surgeon to a Physical Medicine and Rehabilitation doctor who specialized in CP. At that appointment I asked that doctor about Becky’s spinal cord because her pediatrician had mentioned a slight curvature at her last well-check but did not seem overly worried at that point. Sure enough, Becky now has a diagnosis of Scoliosis and we are adding a new Orthopaedic Surgeon to the team game plan to keep an eye on that as well.

The Wake-Up Call
Our story should be a wake-up call to not only professionals worldwide on boosting parents as advocates and pushing for increased access to services but also to those leaders who are making cuts to funding programs and services for the disabled. Preemie parents worldwide consistently talk about how their infant’s NICU bill was hundreds of thousands of dollars or even millions of dollars. In the NICU the babies get high level care to help them survive yet we seem to think little of continuing that theme once survival is on the horizon. Discharge from a NICU ends up feeling like a family is walking off a cliff. Right now in the United States, we have a federal health care plan that is better than nothing at all but needs work to improve coverage. Yet in a politically divisive atmosphere we are pawning off our disabled citizens to great uncertainty with cuts to Medicaid services. Medicaid patients are not some invisible group. They include a majority of the babies in the preemie community. I had always believed that our country would do the right thing by the disabled population, both young and old. Yet in watching lives being affected on a congressional floor with the swipe of a pen or few strokes on a keyboard, I am beyond concerned. Why? Because increasingly healthcare guidelines and eligibility for services for the at-risk populations has become less about doing the right thing and more about saving money supposedly for the government and i.e. the taxpayer. We seem to focus on the minimum for preemies and even then it is a struggle to get those services. Guess what? We do not save money by cutting services or limiting them. We end up paying out a larger amount of money in the long run when a preemie struggles with health, with school, with work, with life. Doing the right thing by preemies by giving them access to services and help at the very beginning and ongoing is the most cost-saving plan of all. They likely mitigate the need for help in the school systems and later on in society if dealt with in the early years.

We Have to Level the Playing Field
Today Becky is almost 14-years old. She is what one would call “Twice Exceptional” meaning that she is deemed “gifted” but also has disabilities. I have always leveled the playing field for her with the mantra, “With challenges come gifts and everyone has challenges so everyone has gifts.” She gets it and knows it to her core. I hope and pray that her generation is one that learns to understand this as well. Perhaps they will get this access issue under control because we have done a truly poor job of it ourselves.