The Preemie Parent Curse: The Known Unknowns

The question that many preemie parents hate most, is the question those same parents are always asking doctors; “But, he’s going to be alright, right?”

In reality, no parent knows how their child will turn out.  Many seemingly “typical” babies go on to have special needs like Cerebral Palsy, Mental Retardation, Learning Disabilities, Autism, ADD/ADHD, Obesity, Hearing or Vision loss and on and on.  “Typical” babies, as we all know, can also die from many causes.  There are no guarantees, regardless of the heath or gestation your child was born.  However, the difference between being the parent of a “typical” baby and a preemie, especially the extreme and micro preemies, is your chance of any or many of these issues effecting your baby are significantly increased.  Even with both of my boys being premature, with Kellen, I’ve always assumed he’d do what most kids do.  With Owen, there are no assumptions.

It was last May at Kellen’s end of school year party that these unknowns hit me hardest.  I saw a video of all the fun things the toddlers did over the year – dancing, painting, singing and having so much fun with friends.  What should have been a really special moment celebrating Kellen and his school friends had me in tears as I watched.  All I could think was, “please God, let Owen have these same opportunities.  What if he doesn’t get this too?”  As the parents around me slipped small tears of, presumed, happiness.  I silently sobbed.

I’ve since been coming to terms with the unknowns with Owen, but it’s something I work on every day.  I focus on what he CAN do.  I take pleasure in seeing doctors surprised at how good he looks and I take comfort in his easy smile and diligent work ethic.  I control what I can – my staying at home with Owen and our still sending Kellen to school is partly because we want to give Owen the one-on-one time that will help him in his development.  There is proven data that children with PVL (the name of his brain damage) who are higher in birth order do better than those later in birth order. I ask questions, I study what PT/OT and Speech are doing with him.  I push for new/better/more frequent help when I think it’s needed.  I push Owen, but also encourage and celebrate each step he makes.  I’m sure I make mistakes, but I work hard at being Owen’s best advocate.

Even with that said, staying positive is something I have to continue to work on because the risks are very real for babies like Owen.  When they are born, It starts with, “will my baby live?” and each day you get further away from birth you get more and more confident that your baby will be one of the lucky ones.  But I also know that any day can be a PICU day.

Shortly behind living are all the short and long-term special needs these children face.  Here are my really honest answers to many questions I get, and ask myself, about Owen.

  • What do the doctors say about his development?  – They say he’s behind
  • Will he walk? – I don’t know.
  • Will he run? – I don’t know.
  • Will he walk funny? – I don’t know.
  • Will he hear? – He does now, it’s checked frequently.  CMV hearing loss is progressive (gets worse over time).
  • Will he see?  – He does, but I still think he’ll need glasses for eyes crossing
  • Will he outgrow his asthma? – I don’t know, he has family history on top of personal history.  He may have been asthmatic even if he hadn’t been born early.
  • Will he outgrow his tracheomalacia?  – I don’t know.
  • Will he always need oxygen? – I doubt it.
  • Will he outgrow his allergies? – I don’t know, probably not all of them
  • Will he always need his g-tube? – I don’t know, I suspect not
  • Will he talk? – I don’t know.  He’s finally started coo’ing, I’m getting more hopeful
  • Will he always have a raspy/quiet voice? – I don’t know, probably
  • Will he always have that big bruise on his wrist?  I don’t know, it may get lighter
  • Will he have a normal IQ? – I don’t know, he’s tracking better cognitively than other areas
  • Will he have learning disabilities? – I don’t know, on top of the preemie risks, they run in my family
  • Will he have behavior problems? – I don’t know, they seem to exist in most families
  • Will he be autistic?  – I don’t know, preemies are 5 times more likely
  • Will he have a sensory disorder?  I don’t know, he’s easily overstimulated but not as extreme as what I’ve heard of with other kids.
  • Will his teeth come in fluorescent green? – Oh man, I hope not.  It’s a risk with heavily medicated neonates.  Especially those who had extreme jaundice like Owen.
  • He has brain damage, what does that mean? – It means parts of his brain don’t work.  He may or may not be able to compensate with the other parts of the brain, it’s too soon to tell.  The damage is in an area that many pathways come together so we don’t know what type of skills it may affect.
  • Will he be alright? – I don’t know your definition of alright, but we are working to give him his best chances to be the best Owen he can be.
  • When will you know?  – On most things, by the time he’s 3-5, some things are closer to 10.  Then again, I’m 35 and sometimes still wonder if I will turn out all right.  It’s an ever evolving question, no?
I’m sure I missed several, but I’ve already belabored the point.  There is so much that we don’t know.  And these aren’t just will he be a Doctor, Artist or Police Officer.  Many of these questions are fundamental skills that will impact Owen in every aspect of his life.

I remember being really frustrated with the doctors when they gave me similar answers to the above.  No empathy, direct and matter of fact (take away the calculus and cadavers and I’d have made an excellent doctor).  But I’m slowly starting to get it.  First, it’s impossible to know.  More importantly, questioning his potential does nothing for Owen.  It’s about giving him the opportunity to shine.  It’s not about being jealous of the kids that can or the parents that don’t have these worries.  It’s about taking a lesson from Owen;  Smile frequently.  Work hard.  Breathe.  With that combination, you can accomplish just about anything.

© Copyright Tatum, All rights Reserved. Written For: Ain't No Roller Coaster

12 thoughts on “The Preemie Parent Curse: The Known Unknowns

  1. If ever we needed a “LOVE” button… Do you like these posts to stay in your circle? I know a few who would really love to read this…

  2. Who, but God, would have known that we could learn so much from such a small being. “It’s about taking a lesson from Owen; Smile frequently. Work hard. Breathe. With that combination, you can accomplish just about anything.” Thanks for sharing

  3. Love this blog. This is the story of my life right now. I feel like I’m on replay all day answering the same question with the same answer ‘I don’t know’ thanks again for a fantastic blog that brought a massive smile to my face.

  4. This is completely, completely beautiful and brave. I love it. My daughter Caroline had her right temporal lobe removed due to a tumor that started causing seizures when she was two. For what it’s worth, I think you’re thinking about this exactly right. Thank you for this.

    • Thanks for checking out this blog Marta. Knowing you’re ahead of me on a similar journey, it’s always worth hearing your thoughts. Thank you!

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  6. I loved this post. I remember having the same experience with seeing a “normal” child. We were at a local hardware store when James was 8 weeks old and we just found out about the CMV. There was a little boy running around and dancing in the aisles. He was grabbing different items and trying them out– a hammer, a tube that doubled as a telescope, markers etc. In reality, this little boy was just being a handful. . .but I felt this incredible jealousy. At the time we hadn’t had a head CT done yet and so didn’t know about any brain damage and all I could think about was, I hope my little boy is a handful some day as well. I was so scared he wouldn’t talk, wouldn’t be able to communicate with his world or with me.

    The only thing positive I can say about those sad, scary days was that they passed. They passed, I turned out to be stronger than I anticipated and nothing turned out as bad as I thought it would.

    Many blessings to you during this time.

    PS. We would like to have you over for dinner. 🙂

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