Premature babies, should the school know?

I saw a link to this article, a paediatrician from Glasgow thinks that because premature babies have more problems as they grow up than children who are born at term, the schools should have the gestational age on their entry forms.

I disagree.

We actually lied about Violette’s birth history when she was enrolled in school. Our reasoning was that a) we did not want her to be labelled, as many other premature babies are, we did not want teachers and the school to have lower expectations for her because she was extremely preterm. b) premature babies have more difficulties it is true, but many children born at term have difficulties at school also, they should all be able to get the assistance they need. The school should be able (and appears to be able) to identify any problems she has, and develop interventions if needed to address them. How does knowing she was born at 24 weeks help the school to help her?

On the other hand if she had a specific learning problem identified, that the school needed to know about in order to intervene, then yes, they need to be informed and we would have told them. Premature babies have a range of abilities and difficulties when they grow up, just like babies born at term, being born prematurely is not an impairment!

If she now had difficulties organizing her work, and staying on task (the kind of executive functions that many ex-preterms have) then they are not such unusual problems! Lots of children who were born at term also have those problems, and they all need strategies to help them out. Preterm babies problems in such fields tend to improve over time, so when would you stop telling people that she was an ex-premie?

If she had cerebral palsy, and needed help to climb the stairs in the school, then the school needs to know about that specific issue. They still wouldn’t need to know that she was born too early.

I am very proud of my little girl, and not at all shy about telling people that she was born extremely prematurely, but, on balance, I think the school are better to teach her, and evaluate her, without any preconceptions based on her birth history.

About keithbarrington

I am a neonatologist and clinical researcher at Sainte Justine University Health Center in Montréal
This entry was posted in Neonatal Research. Bookmark the permalink.

10 Responses to Premature babies, should the school know?

  1. Alyssa Kent says:

    I guess this thought has not even occurred to me because we are still so in the thick of sorting out the early effects of extreme prematurity for my nearly 2.5 year old daughter. It is so important to think about because perception and expectations really do go hand in hand. I’m thankful that I have a few years to think about how to approach this, but appreciate this post for planting the seed.

  2. Rebecca Wood says:

    I don’t know where I stand on the issue. My former micro preemie participates in a twice a month toddler program with other kids without special needs. The interaction has brought to my attention concerns I did not consider.

    For example, Charlie sits in a high chair at snack time instead of at the tables like everyone else. The chairs are too big for her and, if helped into them, she falls out of them due to poor core stability and endurance. If the group goes anywhere like the playground, Charlie gets carried while the rest of the kids walk because her steps are slow and unsteady. Her lack of language is another obstacle.

    It is difficult to find a good fit for her. Cognitively and socially, she is evaluated at or ahead of her actual age. However, she is behind in the motor skills and speech areas which complicates things. I want her to be with her peers (she learns from other kids) but I don’t want her to become frustrated that she can’t keep up.

    Anyhow, back on topic… If disclosing her premature birth will help a school official assist me in finding the best fit for Charlie, then I don’t mind. However, I am concerned about bias and lowered expectations. The question is something that will reside in the back of my thoughts for the next few years as things unfold further for us.

  3. Kathleen says:

    Couldn’t disagree more (and I think this is the first time I’ve ever thought that about a post of yours!) Schools are not overburdened with resources these days, and kids who run into problems that aren’t easily identified run the risk of either being ignored or being labelled with something that doesn’t fit. I’ve worked closely with our teachers, schools and follow-up clinic to get the best solutions for my daughter. Knowledge is power and information is power, and I think by sharing info about my daughter I’m empowering her, her teacher, and other preemies who come after her. The doctors and therapists who have helped us over the years have benefitted and been able to offer better care from knowing her story … why not her teachers? (My apologies if I’ve sent in multiple replies … I kept getting kicked out of the posting process and couldn’t tell if anything got through!)

    • Thanks for your comment, it did come through twice and I approved the most complete version. I am not certain that I am right here (and I usually am certain that I am right!), but I think it might make a big difference what kind of health care and educational system you are in.

      My biggest concern was not wanting Violette to be labelled and therefore to end up with everyone having lower expectations. In another system, other considerations become more important.

      However we can end up with the best, most appropriate services for our children, that is what is important. If it works for you in your system that people know about your daughter’s background, then more power to you. I don’t think there is one answer to this issue.

  4. I am on the fence with this one. My preemie is only 21 months now so I am not sure how I will handle school. But, I think if she presents without a disability, I will keep it to myself. However, if she has one, then I will probably disclose it so that she can get the services she needs. I have a while to think about it. Thanks for posting this!
    My daughter Joy was born at 23 weeks last year. Due to modern medicine and prayers she is doing great today. I hemorrhaged at 17 weeks for the first of 4 times because of 100% placenta previa, which turned into placenta accreta (which I believe was caused by 3 prior c-sections). After she came home from 121 days in the NICU, I wrote a memoir called “From Hope To Joy” about my life-threatening
 pregnancy and my daughter’s 4 months in the NICU (with my 3 young sons at 
home), which is now available on both the Amazon and Barnes&Noble websites. It was quite a roller 
coaster that I am certain some of you have been on or are currently riding on. My mission is to provide hope to women struggling with
 high-risk pregnancies, encourage expectant mothers to educate themselves before 
electing cesarean deliveries, provide families of premature babies a realistic 
look at what lies ahead in their NICU journey, and show that miracles can 
happen, and hope can turn into joy.
 Please see my website http://www.micropreemie.net and http://www.facebook.com/jenniferdegl and watch our amazing video of my daughter’s miracle birth and life at: http://www.youtube.com/watch?v=V_hleySg-iU
    
Thank you.

  5. katharinastaub says:

    Keith, your blog entry has really had an impact on us as families with premature children in different school systems. We are from North Vancouver, BC, Sherwood Park, AB Toronto, ON and the Waterloo Region, ON.
    We respectfully disagree with your stand on not informing the school about a child’s premature birth. We have compiled our individual points into one statement.
    Just having a fill in the blank line to put the gestational age or birth complications of the prospective student on a school entry form does not mean we need to fill it in; It should make us think however.
    Kate: Not all parents of preterm children have the benefit of years of specialized training, the awareness of possible developmental issues, or the awareness of available services that a neonatologist might have. Many of us need teachers and other professionals to help us find appropriate help for our children. To say that parents should not disclose information about their children, because in your experience it hasn’t been necessary, invalidates the experiences of so many other NICU graduates and families.
    Some parents have had to fight hard for services for their children and have been denied support because their child doesn’t have a particular or recognized diagnosis. Some parents have had to enroll their developmentally unprepared child in school based on their birthdate because their school board would not accept that the child was (from a developmental point of view) actually a year younger than their calendar age – and those children struggled because of this. Some parents have been told their children had ADHD or autism, but then upon evaluation by someone well-versed in the impact of prematurity, discovered that their child had physiological issues that needed occupational therapy, not drugs. All of these situations would have been much less damaging for children and families if everyone involved had understood the long-term impact of prematurity and what can be done to help children born preterm succeed in school from the start.
    Parents should talk openly with teachers about all kinds of issues that might have an impact on a child’s school experience. To say that we shouldn’t talk about prematurity, when talking about it openly might get our kids the right kind of help when they need it, seems to say that we should be ashamed of it. We are not ashamed that our sons and daughters were born early, and we are not going to assume that anyone will understand our children’s needs without the benefit of information.

    Lisa: I quote, “premature babies have more difficulties it is true, but many children born at term have difficulties at school also, they should all be able to get the assistance they need. The school should be able (and appears to be able) to identify any problems she has, and develop interventions if needed to address them. How does knowing she was born at 24 weeks help the school to help her?”

    This statement is frustrating. In the North Vancouver School District 44, they have almost no resources! My daughter is full term and has an official diagnosis and we have had to send her to a private school because there was virtually no applicable help available for her. This has proven to be a disaster however and we are pulling her out and putting her back into the public system where she will struggle but the alternative means she would be with not only learning disabled, but also intellectually disabled children. Simply not a fit.

    My son, on the other hand, has no official “diagnosis”, but is my preemie and he has spent most of his elementary years being misunderstood and unassisted! This makes me so upset to speak about.
    He is actually doing fairly well in high school and is receiving some learning assistance….it isn’t that great really, but it does mean he is able to take one less class and have more time to finish work at school. Also it allows him to write exams in a quiet room (he scores almost 20% higher on anything when he opts for this accommodation) among some other things. So it is worth it.

    I know without a doubt, that if left to the school nothing would be done. No human being (teacher) can provide individualized programs to 30 plus kids, in many cases they are already dealing with split classes. That having been said, if more learning differences, and conditions that affect children’s learning and development were recognized from the outset we could coerce government to provide more funds to assist these kids. My children attended a school with a population of 500. There were 2 full time learning assistance teachers and a speech therapist that covered 3 or 4 other schools. It is still the same. This process was ultimately a waste of resources because they were spread far too thin to make any kind of impact. Currently the statistics available claim at least 15% of the school population has a diagnosed learning disability, and obviously there are many undiagnosed as well. That is 75-100 kids in my children’s school alone. There is only one district psychologist working with all these children. You can wait, literally years for an assessment and a private one is $4,000.

    I can tell you from experience, with a preemie and a full term both requiring extra help, one with specific diagnosis and one without….we were left to fend for ourselves. I am educated, as is my husband and we have resources, yet it has been overwhelming. How are other less fortunate families to deal with this, pay for this, advocate for themselves? They aren’t. There is no doubt in my mind they will slip through the cracks and be told the same things that I was told along the way, like my children were 50% more likely to have drug problems and drop out of school. Oh, by the way my daughter was in grade 3 the first time I was told that. To be told this and in such a way is not at all helpful and can be upsetting, possibly traumatic for the parents to process.

    Carolyn: We invest so much in our prematurely born children’s potential when they first arrive, and to disregard their prematurity at the onset of school has an enormous potential to undo or discount all the hard work everyone invested into saving each premature baby’s life.

    Delays not identified or identified very late can often become debilitating in the long term, which can lead to problems in school, lack of completion of school, unemployment, chronic unemployment, depression/dependencies, etc. By not helping children identify any delays or deficits they may encounter from their very early years (say 0 months to 4 or 5 years old) is like undoing all the work we all did to get our kids out of the NICU and prepared as can be for starting school.
    Our society is changing when it comes to “labels”. We still have a long way to go, but our country is working hard to adopt the concept of trying to focus on the achievements/successes of each individual based on their ability to try their best, etc. A disclosure of “prematurity” should not be considered a life sentence of lower expectations. Explaining prematurity to each and every teacher, teacher’s assistant, early childhood educator, enhanced resource specialists, whatever other titles exist out there, means we shed light on what prematurity means to individuals, families, as well as communities, and how to address individual needs in an honest, respectful and fair manner.
    My twin boys (27 weekers…and they will always be 27 weekers, not ex-27 weekers) are in the process of getting all ready for Junior Kindergarten in September and I reached out to every service provider I could in order to ensure the twins have an enhanced staff person in their current pre-school, they also have a resource consultant who comes in to visit them every other week and identifies any developmental gaps or concerns and begins a plan of action immediately. The key to having an enhanced staff person in the class is that no one child is singled out as “different.” The enhanced staff is aware of specific needs of some children and when taking time to interact with such children, he or she will accommodate whatever the identified need is. Each child in the class, regardless of whether or not they have a “special need” will get attention from that staff person, so that the classroom is all-inclusive. No one is being “labelled,” except to say they were born premature and these are some of their needs or areas to work on.
    The organization that provides us with this service has an “Early Learning, Child Care & Family Resources Statement / Philosophy,” which explains CPBF’s values very well. I am pleased by how well thought out it is and the individuals who run the program stand by this philosophy based on what I can tell in their actions and conversations they have with me.
    Here it is:
    “ELCCFR program believes that:
    • Early identification of delays and early intervention is vital to promoting healthy development
    • Everyone benefits from quality inclusive child care
    • All children have a right to high quality child care
    • All child care programs have the right to available resources and to successfully meet the overall needs of every child
    • Families are the key decision makers for their children
    As members of the Special Needs Resourcing Collaborative, we are committed to inclusive early learning and child care that promotes healthy child development. We believe parents/guardians should be involved in all decisions about the well-being of their family. We believe children and families should receive similar services regardless of where they live in Waterloo Region. We believe in the strength of children and families.”

    The board of Canadian Premature Babies Foundation could not agree more.

    Katharina: After our children’s follow-up appointment at age 2, our twins were referred to an early intervention program. They received specialized funding to support their language development. This funding runs for a maximum of three years and it meant that we needed to discuss our children’s origins, (prematurity) with the school when we enrolled them in kindergarten.

    Being a former teacher, I can tell you that it can be a challenge to see some of the very subtle challenges many preemies face when you don’t have a lot of experience. It is often difficult to get funding for our kids because some of the challenges they have cannot be put in a neat box. The funding we now have, may only last until November and then be done. At that time they will be 6 years old. Then what?

    As parents we have lived and seen many successes and those have sometimes required work and help from allied health professionals and school systems.
    I have worked very hard this year to create an atmosphere where we can work with the school, support the teacher with our home team and also be present to help out in the school ourselves. It has made for a very good relationship and our children love school. I think as parents we want to set our children up for success in that we do what we can to make sure they enjoy school and get support if it is needed-this goes for all children.

    I believe that it is good to be transparent with the school, I have not seen that there are less expectations for the twins when compared to their peers.

    Kate Robson
    Lisa Christie Torreggiani
    Carolyn Leighton-Hilborn
    Katharina Staub

    Canadian Premature Babies Foundation-Fondation pour Bébés Prématurés Canadiens

    • Thanks so much for your comment.
      I think this is the first time that I disagree with Katharina about anything!
      I would say that it is very important that children with special needs get special attention. Whether that is learning disabilities, motor problems, speech delay, or whatever. Those sorts of problems are more frequent among former preterm babies, but not one of them is a problem for all former very preterm babies.
      In many provinces (and other health care systems) you need to have a diagnosis in order to get services. In some provinces the list of diagnoses that will work includes being very prematurely born.
      If that is the case for you, go for it!
      I know that we are very fortunate that Violette does not have any serious issues that need intervention. Her minor problems are things that can be seen in other kids in her class. If that were not so, and she needed intervention, and we couldn’t get services without telling the school that she was born prematurely, i would have no hesitation, her needs would come first.
      I still feel though, that it should not be like that, being preterm is not an impairment or a disability, learning or speech difficulties need intervention whatever the original underlying cause, and the intervention depends on the pattern of deficit, not on your gestational age.
      My youngest boy had a serious speech delay (now very much resolved) he was not premature, should he not be able get intervention based on his needs?

      So I don’t think there should be hard and fast rules here, I live in a province where many people have a very negative view of premature babies, (although I think it is changing) if I lived somewhere else maybe I would have a different attitude.

      • katharinastaub says:

        Good morning Keith. I had to smile at your comment. It is the first time I disagreed with YOU on anything too;)
        I do agree with the statement: “being premature in itself is not an impairment” but having contact with many families in Canada has shown me that there are many issues with prematurely born children once they start school. In our case, the children’s teacher has the information she needs to support our children in school. This, in my opinion, included their follow-up information and this information in turn was based on their extreme early birth (this is why we had early intervention-though who knows how things would be without all that? I have no answer to that). I also think that there should be no hard and fast rule, because there just isn’t one that works for all. I live in a province where I don’t think there is such a negative view of prematurly born children.
        Agreed as well, that children with special needs deserve and require all that the school and we as a society can give them. I think this has been a good discussion, thanks for bringing up the topic and thanks to Kate, Lisa, Carolyn who also voiced their opinions.

  6. Feziwe Molefe says:

    my twins were born at 27 weeks and will be starting their grade R next year’ question is how should I know if they are ready for school @ 2016 for grade 1

    • Thanks for the question, I can only answer in general terms as all babies are different. Some school districts are very rigid about school entry, and insist that children go to school when their chronologic age makes them fit the rules. I think this doesn’t work for all preterm babies, many are more immature than their chronologic age, and many are more immature than their corrected age would suggest.
      I think school entry decisions should be sensitive to the situation of the individual child, as well as the school system they are going into. I would suggest seeing a pediatrician who is experienced in the evaluation of preterm children, in order to make the best decision for each one of your children, sometimes a developmental or educational psychologist can help also.

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