Getting THE Diagnosis

THE diagnosis may have a different name depending on the person – Maybe it’s Autism, Cerebral Palsy, IVH, Spina Bifida, Down Syndrome, prematurity or some genetic disease that is only listed by the chromosome that it affects.  For the purposes of this post, the label really doesn’t matter, if your child has had THE diagnosis – you know what I mean by calling it THE diagnosis.

It is THE diagnosis that leaves you wondering what the future holds for your child.  Questions like, will he ever be self sufficient – have a job or live on his own?  Will he walk? Will he talk?  Will he be made fun of on the playground?  Will he even get to join the other kids on the playground?  I could go on and on, but I did that already in one of my first posts called, “The known unknowns“.  The point is, when your child receives THE diagnosis, you know that he or she will likely have special needs for life.

For us, THE diagnosis was Periventricular Leukomalacia (PVL).  PVL is a form of brain damage that is often associated with cerebral palsy, mental and physical delays, seizures and behavior problems.  Owen was about 2 months old when we learned that he has PVL.

One of the pieces of information I can see on this blog is what search terms bring people to ANRC.  The most common way people find this site is looking up information on PVL.  Everyday, there are more than 15 views of that post that was posted this summer.  This post, is my message to those that find ANRC because they are researching their own child’s recent diagnosis of PVL.  It’s also for any parent that’s received THE diagnosis with any other name.  It’s our story of coping with THE diagnosis.

I’d like to say I took the news well…and I guess you could say I did take it well at first.  At the hospital I steeled myself and asked questions like how significant is the damage..is it big or small (the avoidance of answering the question told me it wasn’t small), what does this mean for his future, when will we know.  I stared at the black spots (cysts; which is where portions of the brain turn to fluid and dissolve) on the ultrasound and silently my heart sank, but I didn’t show a lot of emotion in the moment.

However, as soon as I was home and alone I lay on my bedroom floor in a heap with a box of Kleenex and cried huge uncontrollable sobs and grieved the fact that Owen would not be one of the 20% of 24 week preemies that survives with no long-term issues.  I imagined all of the worst case scenarios and I cried for what the future may be for this baby who was still critically ill.  I knew I should be grateful, it was only a week or two earlier that we had feared we were imminently going to lose him, but all I could think is “IT’S NOT FAIR!  WHEN DOES HE GET TO CATCH A BREAK, WHEN DOES SOMETHING GET TO BE EASY FOR HIM?!”  I cried and cried and cried.

And then I picked myself up and have never cried about it since.  I still grieve the loss of “normal”, but just like the CurePity post last week, I already knew dwelling on those thoughts is not what Owen needed.  My motto, that I first said to Kyle and then repeated to everyone until I believed it was, “No parent knows what the future holds for their kids.  Some parents don’t learn about PVL until their child is three and not walking.  We are lucky to know now – it means Owen starts getting help now.”

Instead of dwelling on it in a negative way, I became proactive about it.  I researched the outcomes through research papers and I made sure development was considered in his care.  I shared the statistics with our family and mentally prepared for what might come.  At the same time, I really focused on what he was doing and pointed out everything I saw, good or concerning, to his team.  We work on “therapy”, which is really just purposeful playtime at least 45 minutes most days and then another few hours on eating.  Plus we have 3 therapy appointments most weeks.  When I hold Owen I think about how I’m holding him, when I hand him things I switch sides, I build his development into most activities that we do.

Some think that I am obsessed or worried because I really do notice everything, but honestly, worry is not in my mind when I’m pointing out what I see.  Pragmatic and proactive and dedicated are the words that I would use.  I want Owen to have his best chances, and I refuse to look back five years from now and wonder “What if”.  I do give him breaks.  If he’s not feeling well, I don’t push him and if he’s not having fun, I stop, but when he’s willing to play, so am I.

I’m sure my advice will evolve as we continue down this journey, but 18 months since getting THE diagnosis, here’s my advice for those that are facing their own THE diagnosis.

  • Don’t be afraid to be upset.  Cry, scream, yell, punch pillows (please, not brick walls)…whatever it is that helps you release the sadness.  Get.  It.  Out!  Acknowledging sadness and anger is healthy and to be expected.  At the same time, don’t dwell on it.  This weekend I had coffee with a mom to a 6 month old who was diagnosed with Down Syndrome shortly after his birth, she said after the doctor gave her the list of what could go wrong, she thew it away.  She knew, it couldn’t be her focus.  That doesn’t mean she didn’t get upset, she too cried and cried, but she didn’t dwell on it.
  • Instead, use that sadness and anger for good – get your child the help that he/she needs.  Don’t be afraid to be a pain asking for help, but also be willing to give just as much as you ask for.  For us, the decision for me to stay home with Owen to focus on his development was the right decision   Financially, that’s been a tough pill to swallow, but it’s what has worked for us.  Other people have other, just as effective, ways of solving the same problem.  What’s surprised me most is I’ve learned when you use anger for good, the anger seems to transform into determination.  Determination is where power comes from.
  • Celebrate every accomplishment.  I’ve learned to make the goals small enough that there are frequent successes.  Each time Owen succeeds and sees us celebrate with him, it motivates him to want to try more and it motivates me to keep working with him.  Also, celebrating is a great way to slow down and appreciate the journey that we are taking.
  • Don’t lose hope.  For me, I needed to prepare for the worst, but that never made think Owen didn’t have every possibility in front of him.  I have no idea what the future holds, but I am hopeful and I’m more than willing to let Owen keep blowing my mind with his amazingness.

I know there are many readers who are further along the path of getting THE diagnosis.  What other advice would you give to the parents who just received THE diagnosis.

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

9 thoughts on “Getting THE Diagnosis

  1. Hi. I am a big fan of your blog! This post really resonated with me. I’m a mom to former 24 week twin girls. We had a 4 month NICU stay with the usual ups and downs and then one of the girls received a genetic diagnosis while still in the hospital. For me, getting that diagnosis was the hardest thing I ever went through, even aside from the NICU stay itself. I think it’s because the genetic diagnosis is lifelong and non-changing. The prematurity-related problems were so difficult as it was, but at least they were things that could be treated with medicine. They were things that could hopefully be cured. Not so with a chromosomal abnormality.

    The disorder my daughter was diagnosed with is rare and in my opinion, so bizarre. It’s not life-threatening if kept under control, but it is definitely life-altering. The news took awhile to sink in. The geneticist who gave us our diagnosis was very optimistic and positive, but when I left the hospital I began doing my own research and quickly became devastated. Devastated because everything I read stated that she would likely be mildly to moderately impaired intellectually. Devastated because everything I read seemed to indicate that independent living would not be possible unless a treatment was found to keep the hallmark trait of her disorder under control. Nobody knows if that treatment will be found in her lifetime, but at least that’s something we can hope for.

    My advice to the newly diagnosed is to understand that what you are reading online will likely point to the worst case scenarios. There can be many different outcomes with a diagnosis so please keep that in mind. Look for blogs, don’t just do general research. I wish somebody had told me that. It would have saved me a lot of grief. My daughter’s syndrome is on a spectrum, meaning it will affect each person differently. It’s not all doom and gloom after all. Reading the blogs written by parents of children affected by the same disorder has given me so much hope and has made me feel so much better. Thank goodness for those who are willing to share their personal experiences in the hopes of helping others. I plan on doing the same when she gets a little bit older.

    Thank you for writing about something that few people are really able to understand. I admire your strength! Owen is a little warrior.

    • Thank you for sharing your story, Kristie, and for the great advice. I agree, there are so many places to find the worst case scenario on the internet. I look forward to reading your blog when you decide to start one.

  2. This is a timely post for us! Next week, we will finally have results from a test that’s been “held over our heads” since our son was born at 23 weeks. He’s 4.5 months actual, so it’s been a long time coming. I don’t know what the tests will show, but if we are faced with THE diagnosis, I will definitely reference this post. Thanks.

  3. Great post Tatum!! I especially love your comments around celebrating every accomplishment! So true! Getting Evan’s diagnosis was one of the worst days of my life but at the same time, once I knew, I felt like I could start focusing on what I needed to do to be the best parent to Evan. And I knew it would be ok.

  4. I found your blog by searching for PVL. My now 11 month old son was diagnosed with severe PVL on September 8th of this year. He was born at 30 weeks, spent 35 relatively uneventful days in the NICU and we thought we had dodged the bullet when we were discharged with what seemed a perfectly healthy baby. At 3 months old he developed a nystagmus with his eyes that the dr said we would watch and get an MRI closer to his first birthday if still present. Then one day in late summer he started acting like he had severe vertigo. Within 3 days we were seen by the pediatrician, ENT and Neuro. All said it looked like vertigo, but babies don’t get positional vertigo, so he was scheduled for a MRI the 4th day. At this point he had already been diagnosed as low tone and there were significant concerns regarding his seemingly questionable vision. but nothing had prepared us for the bomb of a PVL diagnosis. The neuro handed me a card with the diagnosis name scribbled on it, directing me to their practice website for more information and sent me on my way. I sat in the car nursing Griffin, googling PVL and sobbed. I cried every time I was alone for the first month. I’ve spent the last few months researching, questioning and grieving a situation that seems senseless. We have a 6 year old son as well. He has proven to be the most compassionate and patient big brother we could have dreamed of for Griffin. I struggle with the guilt of how much time and attention Griffin’s care takes and feel like I am not balanced in the attention I give them. Add that to the mile long list of things and what ifs I worry about all day. Griffin won’t eat food, won’t take a bottle and nurses exclusively, despite our best efforts. This adds to my availability to him. I am blessed to stay at home with him and we are grateful he receives OT and PT 4 days a week. He is making progress, although it is slow. He is not sitting up unassisted, nor is he rolling over or crawling, but he smiles like crazy and babbles and seems to have developed some vision, which feels like we’ve won the lottery. I don’t know why I am sharing all this. This is the first time I have reached out to anyone. I have found your blog to be real and comforting and informative. It makes me feel like we’ll be “ok” regardless of what that “ok” looks like. My grasp on all this is still new and raw and I feel like I am just now getting my feet under me. Thank you for sharing your journey. It has made a difference to me and made me feel less alone.

  5. Pingback: Facing a Diagnosis and a Bruise « An Early Start

  6. I’ve just read your excellent blog after it was recommended your blog by another PVL parent. My son has just got a PVL diagnosis at 4.5 yrs old; it wasn’t until he was aged 2 that he slipped over the line of late but typical development and so we struggled to get any support early on. It was extremely isolating. I also write a blog and have written about what it felt like to get a diagnosis after 4 years of worry.

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