Special Needs? No… just special.

I went to a first birthday party this weekend, I’ve been going to a lot of first birthdays lately.  There were approximately 22 new babies born in a 6 month window amongst my local friends from OCT 09 – April 10, some were friends I made in the NICU, others I met on BabyCenter birth boards and we became friends in person, others I’ve known for awhile and we all just happened to get pregnant around the same time.

At the party, there were twin boys there, also preemies, that are now starting to walk (they were a year in OCT) and the little birthday girl is also walking.  And there is Spencer, Army crawling around everywhere because he can’t crawl on all fours yet.  Someone at the party asked how old Spencer was, and I smiled and said he’d be 15 months old this month.  They smiled and said boys like to take their time doing things like crawling and walking.

I think my skin is starting to get a little thicker, and it’s easier the more things that Spencer is starting to do on his own.  He didn’t roll until he was about 7 months, and that was just from back to belly, he finally completed the circle around 10 months.  I was also concerned that he wasn’t sitting up on his own, and all our other preemie friends were sitting, but if it’s one thing you learn, preemies do things in their own time.  Then there was always the fact that his body has been around the 10% mark, while his head is consistently in the high 80’s% to low 90%, so yeah, might be a little harder to get that big noggin up on his own.

At first we’re all concerned because many of our little preemies aren’t keeping up with the “termies” that are surrounding us, and those that don’t understand are asking us “why not?”  Since most of our magic balls have mysteriously disappeared, it can get frustrating, or you just finally step back, take a deep breath, not let it get to you and tell them, “preemies do things on their own timeline…that’s why he/she/they didn’t wait until their due date.”

In utero, they diagnosed Spencer with Ventriculomegaly and Hydrocephalus and told us he’d need a brain shunt when he was born and that his cerebellum was smaller than normal, but they would keep an eye on its growth.  Not much you can do about all of that except hope that things are not as bad as what you found when you researched it online and completely freaked yourself out.  Sometimes the Internet is NOT our friend.

So yes, we knew there would be some issues, but that would be fine, other than that, he was doing great.  Well, that was until week 28 when I was admitted to the hospital, then the day I turned 29 weeks and he decided to make his appearance.  They immediately started monitoring his ventricles which were twice the size of normal to make sure things didn’t go south quickly.  And to all of our amazement, during our 64 day stay in the NICU, Spencer’s ventricles shrunk back down to where he was NOT going to need a brain shunt!!  OH HAPPY DAY!

We went home on 29 Jan 2010 knowing we were to keep an eye on his head size for any wild growth spurts, but again, his head was much bigger than his body, so how much bigger did it have to become?  They sent us in for a cat scan, all seemed well but they confirmed an absent Septum Pellucidum, which we knew about, and the ventricles were still bigger than normal, but still no need for a brain shunt.  Now…I just needed to be concerned about keeping him away from germs and sick people. 😉

Fast forward to SEP 2010, time for a follow up MRI which we expected to receive the “all is well” from our neurodevelopmental specialist Dr. Dan Doherty at Seattle Children’s.  I was terrified as they had to put Spencer under for the MRI, I don’t think as a parent you ever get used to that, no matter how many times it happens.  He woke up groggy yet his normal cheerful self and smiled at us, so we knew all was well.  Then we had lunch and off to the consult with Dr. Doherty (who yes, I referred to as Brain God in another post).

Dr. Doherty came in, set down and I was very happy that he didn’t beat around the bush, but let us know that on the MRI, it showed that Spencer has a rare brain malformation called Rhombencephalosysnapsis (RS), and there are only 40-50 cases worldwide and that was why his cerebellum was showing smaller than normal in utero.  He is missing the part of his cerebellum that controls trunk stability and balance, which now explains why he can’t crawl or sit up on his own.  Not much you can do about it, but wait and see what happens.  There are probably WAY more cases out there, but many don’t know what to look for, and until the MRI came into use, there was no way to diagnose RS.

With such few documented cases, they really can’t tell you what to expect.  They can’t guarantee he’ll walk for sure, but the odds are very likely, and well, he is my child and I’m stubborn and competitive, so do I think he’ll be a wall flower?  More than likely not, and it’s already obvious he wants to keep up with his friends!

Dr. Doherty’s clinic was kind enough to put me in touch with another family that lives within 40 mins of us that has a 7yr old daughter with RS.  What a God Send to talk to someone that has already walked that path and have someone to vent to, ask questions, etc.  I was the first parent she had talked to that had this as well…7 years of going through this alone, I cannot even fathom that.  So yes, I’m the lucky one to have met a beautiful, scary smart (IQ of 134 if I remember correctly) young girl who calmed all of my fears be explaining to me the significance of a butterfly to Rhombencephalosynapsis.

It went something like this…”Do you know the significance of a butterfly with RS?  Your cerebellum is like a butterfly, the two hemispheres are the wings, and the body separates the wings.  Spencer and I are missing the body of our “butterfly” which controls the stability and balance for the butterfly.”   It hasn’t been easy for her, she’s had several eye surgeries, walked with a walker until she was almost 5 and still goes to therapy, but she also attends a talented and gifted school and her memory is far better than mine.

Out of the mouths of babes…she summed it up and made me realize that this is nothing.  When I think of all the parents that have lost a child, and have gone through so much worse, this is nothing.  This is but a speed bump in our journey of raising our son.  

Spencer will be 15 months this month…as I mentioned he still Army crawls everywhere, and with amazing speed.  He still cannot get into the sitting position on his own, but if we put him there, he will sit for a long time.  He recently started pulling himself up on everything that he can, which is great, except that even he forgets he has no balance so lets go and face plants or lands on the back of his head.  We never freak out, so he rarely cries about it, but believe me, we’re there before he blinks if we weren’t already there waiting to catch him.  He wants to do things on his own, and it’s hard as a first time parent to stand there and not help him grab things just out of his reach, or make it easier for him…I want him to figure out how to get things, I want him to know that if he tries, anything is possible.

To me, he is not special needs, he is like all of our children, he is just special.

For his 1yr photos, we had to use props since he couldn't sit up on his own.

7 Comments + Add Comment

  • Julie,

    As far as preemies doing things on their own timeline, it’s just the way it is. Addie started walking the day before her SECOND birthday–that was in June and nobody believes me now that they see her running and climbing steps all by herself.

    She started talking at 18 months (last January) and now she speaks in complete sentences and can read over 20 words.

    It’s bizarre…and there’s no “what to expect when your baby’s a preemie” book. 🙂

  • I just had to share this entry with my friends and family. I especially love the quote, “preemies do things on their own timeline…that’s why he/she/they didn’t wait until their due date.”

    Like your adorable Spencer, born just a day before my Harrison—it’s really hard when people ask you how old they are or if they are crawling or walking yet or talking yet. I don’t want to say it gets easier as time goes on, but rather it’s accepting life for what it is and remebering everyday that we were choosen to be preemie parents for a reason.

  • Thanks so much for sharing your story Julie. You have an amazing strength and Spencer is absolutely perfect and special!

  • Hi Julie! I was referred to your blog by Natalie, I met her since we are both on the parent advisory board at Evergreen. My little guy Jack was born Jan 2, 2009 and we spent 159 days at Evergreen (he was a 27.5 weeker) He just turned two and is finally walking all the time, he was not sitting at a year and didn’t crawl on all fours until around 17 months with no known reason other then being so early and spending so long in the NICU.
    This is such a touching post. It sure can be hard when people who don’t understand make comments or wonder why Jack is behind. I’ve even had friends ask if I’ve signed him up for special ed and they act shocked when I say that we have every reason to believe he will be caught up by the time school rolls around. I know people mean well, but like you said, your skin gets thicker.
    I’m sorry you have to deal with the further stress of something that is unrelated to his prematurity. you already know he is a tough boy for all he has been through as a preemie and he looks like he is doing really well so that should all be on his side. These little guys couldn’t have made it this far if they didn’t have inherent “toughness” right? 🙂
    Like I said, Jack didn’t walk til two (And he is still pretty wobbly!) and didn’t crawl or sit til long after the normal time as well. A PT reminded me that their little muscles don’t get a good head start since they had gravity on them 3 months earlier then they should have!

  • I love the “butterfly”. It makes something so scary and turns it into something managable.

    My family is the worst at the questioning – why isn’t he doing this, why isn’t he doing that? I’ve answered them with “he doesn’t want to right now”. I know that it isn’t the most appropriate answer, but it stops the questions and lets me concentrate on him rather than the nosy-bodies in my family that have all sorts of advice to make him “perfect”!

  • […] Julie Howard’s son is a 15-month-old former 29-weeker named Spencer.  Spencer has an extremely rare brain malformation, rhombencephalosynapsis.  Basically, the two halves of his cerebellum are fused, making balance and gross motor skills difficult for him.  He may eventually be able to walk, but for now, he’s still working on sitting up.  You can read more about Spencer here. […]

  • What a beautiful little boy Spencer is. I can relate to so much of what you talk about with the questions and trials of being a preemie parent. Our son Jacob is just 3 months old now. Jacob was born at 34 weeks and has had many struggles already, but no matter what, he is perfect! I only wish that we had local people to get together with that also have preemies and have an idea of what our lives are like.

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