By Brenda Stubbs, Triad Regional Coordinator
As both a Regional Program Coordinator for the March of Dimes and the mother of a 15 year old son who was born prematurely, the issue of adolescent mental health is a passion of mine, and has, admittedly played a much larger role in my life than I would have ever imagined. Though mental health is not always an easy topic to discuss – for many a stigma still exists – I have spent much of my son’s life acting as a sponge on the topic…absorbing every bit of credible information that I can in order to better understand my son and how his beautiful mind works.
My son was born prematurely, at 35 weeks – which wasn’t considered “that early” by many at that time. At 5 lbs, he was certainly the largest and “healthiest” baby during his 10-day stay in the NICU. Once we brought him home, he seemed perfectly “physically” healthy those first few years, other than being delayed reaching many of the early milestones. He began struggling with mental/behavioral health issues at age 3, and for a while we put off going to the doctor because so many well-intended people around us said, “He’s 3! Haven’t you ever heard of the ‘terrible 3s’?!” But after he was kicked out (yes, kicked out!) of multiple day-care centers, and after therapists who were coming into our home to help us work with him told us that he wasn’t responding to therapy, we started taking him to various specialists for evaluation. Our child was now being labeled “special needs.”
Fast forward 12 years…my son has been evaluated by some of the best specialists in the state and over the years has had a multitude of diagnoses. Everything from possible high-functioning autism/Asperger’s Syndrome, to ADHD, ODD (Oppositional Defiant Disorder), Episodic Rage Disorder, Pervasive Developmental Delayed…and the list goes on. At his tender age, he has already struggled with severe depression, anxiety, suicidal ideation and homicidal thoughts (although thankfully, the latter two have subsided). He has been on a wide range of medications since age 4 and still remains on several daily meds – something I curse and feel guilty about at times, and something I thank God for at others. Up until 6th grade, he had an IEP through the school system and was categorized as “severely emotionally/behaviorally delayed.” At one very low point, he was assigned a “shadow” during school hours in case he had to be physically restrained. I can’t describe the feeling you have as a parent watching your child…a little boy, MY angel…being restrained by a large 250 lb man who is telling you that you cannot interfere even though your child is crying for you.
Here’s the thing: my son, intellectually, is off the charts. His IQ is unbelievably high – I mean this kid could be a Nobel Peace Prize winner or the President of the USA one day! And I will do whatever I can to make sure he reaches his fullest potential. He has always scored in the top 1% of his grade in the school district and is in all academically gifted programs. In 7th grade, he scored higher than 65% of all high school seniors nationwide on the SAT exam! But there-in also lies the difficulty…you have a child that is about 3 years ahead intellectually and about 3 years behind mentally, emotionally and behaviorally. That is the constant struggle for those of us trying to educate, parent and help mold him into a fine young man. And it is a constant struggle in his own mind, as well.
For the last 12 years, I have asked “Why is this happening to him? To us?” Of course, no one can deny the genetic factor regarding mental health disorders, and in fact, both his father and I have family histories of mental health issues that go way back. And we both have our own struggles with anxiety and depression. But I always felt there was more to it.
Shortly after I began working for the March of Dimes in 2012, and we introduced “Healthy Babies are Worth the Wait,” a consumer education curriculum focusing on the 39 Weeks Initiative, I started connecting some dots. The curriculum emphasizes that the last few weeks of pregnancy, specifically 35 to 39 weeks, are a crucial development period for the baby’s brain. In addition, the last – and therefore the most vulnerable part of the baby’s brain to develop is the frontal lobe, which is responsible for impulse control, critical thinking, and judgment. Was there a link between the challenges my son is facing and his prematurity? In my quest for knowledge and understanding, I have read numerous medical journal articles that link mental and behavioral health problems to premature birth and low birth weight. I can’t say for sure if this applies to my son, but research has shown, and many medical experts agree on the following:
- At 35 weeks gestation, a baby’s brain is still developing crucial “connections” that are needed for learning, coordination and social functioning. The cortex volume, as well as the actual weight and size of the baby’s brain nearly doubles between 35 and 39-40 weeks. The myelin sheath, which is like a protective coating over the nerves, fibers, and synapses in the brain and is essential for proper functioning of the central nervous system, also increases five-fold during this time. The myelin sheath affects how neurons in the brain fire, or mis-fire as the case may be, which is why some medical professionals believe that babies born before this crucial development occurs are permanently “wired differently.”
- Babies born prematurely, even just a few weeks early, have more learning and behavior problems in childhood than babies born at 39-40 weeks. These problems can become more apparent or escalate over time without intervention. For example (albeit an extreme example), Oppositional Defiant Disorder (ODD) in a child can evolve into Conduct Disorder (CD) in a teenager or young adult, which is many times linked with anti-social or even criminal behavior. Proper diagnosis and treatment – and the earlier the better – can often keep the disorder from escalating to that point.
- Evidence suggests that both premature birth (PMB) and low birth weight (LBW) are significant risk factors for mental health problems among children and adolescents. Although the physical problems for LBW and premature babies have long been extensively studied and documented, the behavioral and mental health problems associated with these babies have been much less so until recent years. Moreover, these are issues that are typically not apparent at birth – they often don’t manifest themselves until several years after birth.
In the 2011-2012 National Survey of Children’s Health (NSCH) 85,535 children between 2 and 7 years of age were studied for the prevalence of several mental health outcomes, including: moderate to severe behavioral and emotional problems, depression, anxiety, ADD/ADHD, Autism Spectrum Disorders, Oppositional Defiant Disorder, developmental delays, learning disabilities, and intellectual disabilities.
The significant findings from the study’s authors were that:
- Mental health problems were prevalent in 22.9% of children born prematurely and 28.7% of those born with low birth weight (as compared to < 15% for term/normal birth weight children.
- Children born prematurely had 61% higher odds of serious emotional/behavioral problems, 33% higher odds of depression, 58% higher odds of anxiety as compared to full term children. In addition, these children had 2.3 – 3.2 higher odds for Autism/ASD, 2.9 – 5.4 higher odds of developmental delay, and 2.7 – 4.4 higher odds of intellectual disability.
- Socio-economic status, race/ethnicity, and household structure were also significant predictors of mental problems in premature and LBW children, just as they are in the general population.
- Neurodevelopmental conditions (i.e. Autism/ASD, developmental delays, ADHD) account for the relationship between perinatal conditions (prematurity, LBW) and the increased risk of mental health conditions as children grow (depression, anxiety and conduct problems).
Not only does this issue need to be studied more in depth, but there also needs to be increased monitoring and mental health screening of children who were born prematurely or with LBW. This would provide an opportunity for early diagnosis and intervention.
I wonder, if I had known 15 years ago what I know now – regarding all the increased risks for babies born prematurely, mentally and behaviorally – would I have fought harder for my baby to stay in-utero longer? At the time, I didn’t even know the right questions to ask my OB. Our HBWW education program teaches pregnant women why it’s so important to reach at least 39 weeks of pregnancy due to the crucial brain development occurring in those last few weeks of pregnancy. We encourage women to allow labor to begin on its own IF both mom and baby are healthy and there are no medical complications. It also teaches them the right questions to ask their provider should they find themselves in a situation where they and their doctor need to make some tough decision. In my case, it was a medical complication that required an emergency C-section, but still, I wonder….
In the meantime, I will treasure my incredibly smart, differently wired, challenging-but-oh-so-worth-it, loving, affectionate child with the smile and dimples that melt my heart.
Brenda Stubbs is the Triad Regional Program Coordinator for the March of Dimes/NC Preconception Health Campaign. To reach her, email: firstname.lastname@example.org
- March of Dimes “Healthy Babies are Worth the Wait” Toolkit: prematurityprevention.org
- “Mental Health Outcomes in US Children and adolescents born prematurely or with low birthweight.” Depression Research and Treatment, Volume 2013, Article ID 570743.