If I Knew Then What I Know Now

If I Knew Then What I Know Now

The spring always makes me think of our daughter’s birth, all the the naive lead up, all the shock, all the fear, and all the decisions.

Having a medically complex child has a steep learning curve and the resources available are often limited. You do your best, you try to make the right decisions, but what you mostly do is pray that the things you mess up don’t cost your child their life.

Because you will mess up.

Because you don’t know what you don’t know.

And not every bad thing is something you can change or anticipate.

This isn’t a post to blame anyone.

But I often think back and wonder what I would do differently if I had to do it all again. What would I change, what would I do the same.

If I Knew Then What I Know Now

This won’t be a post about what I think others should do because every child is different, but just what I would have done with our daughter and our situation.

Trach Early, Trach Often

I would have trached sooner. MUCH MUCH sooner.

It’s hard to say if Evie’s airway scarring was from rough intubations, but I can’t imagine they helped. Little spunk used to yank out the breathing tube as frequently as she could get her hands on it.

And we didn’t know back then that her jaw was too small and made it nearly impossible to visualize her airway to safely intubate. They were flying blind many times.

And part of the reason we didn’t trach sooner is because the doctors didn’t know she had CHARGE Syndrome. Back then I assumed they knew something about the syndrome beyond the basics, but with its rarity, they didn’t even know that and were operating off old diagnostic criteria. Had we gotten a proper diagnosis sooner, we may have avoided the significant scarring.

Vent Away

Of course, that scarring was a blessing as well. It prevented the excessive aspiration (letting everything into her lungs) that came later when we opened up her airway. But, since we already know that in this redo situation, we could have gotten her started on a vent with CPAP settings to blow upward from the trach at night and decrease the amount of junk that was filling her lungs.

I Come From C-I-N-C-I-N-N-A-T-I, Cincinnati!

(I hope plenty of you could hear Keanu Reeves and Drew Barrymore singing that song. If not, you need to go find yourself a copy of the 1986 version of Babes in Toyland. Or here’s the song on YouTube. Ah, the memories.)

Anyway, I would have gotten us to Cincinnati Children’s Hospital as soon as possible. Like, I would have gotten her trached and on a vent for nights and then started demanding referrals. Because Cincinnati is amazing for complex kids and has such a good grasp of how to handle CHARGE. Our daughter made so much progress once we started seeing her team of doctors there.

Get Some Serious Help

One of the more stubborn moves on my part after our daughter was born was insisting we did not need a home care nurse. It only took my health crumbling for me to finally admit defeat. If I had to do it again? I wouldn’t have waited so long to get the help we needed.

Complex is Not Common

I didn’t realize just how complex and how unusual our daughter was medically. Is she the most complex? Of course not, but her issues are not the common ones seen by doctors or therapists. I assumed they knew what to do.

They didn’t.

And we had some excellent professionals who openly admitted she was beyond their skills and experience and I loved them for it. That’s what opened my eyes to many who didn’t admit they didn’t know how to handle her.

We lost a lot of time and ground tackling problems that weren’t the real issues. Like treating a non-existent oral aversion because the therapist didn’t have experience with complex swallowing issues. Guess what that therapy approach did? Yeah…it gave her an oral aversion. *sigh*

That’s NOT Just the Way It Is

So many of our daughter’s issues were tossed aside and ignored as “just how CHARGE kids are” and it took years for us to discover how many of those may be “the way CHARGE kids are,” but only because no one was FIXING the issues causing those problems!

For two years, we were told there was little that could be done for the fluid and drainage in our daughter’s ears. Poor thing was miserable. When we got to Cincinnati, they decided to be much more aggressive and got the fluid taken care of, which slowly improved her hearing (and comfort!).

Her low heart rates and poor growth and small feeding volume and constant vomiting were all just chalked up to vague syndrome issues. Turns out they were all caused by a hiding bowel defect. How many others have their own hiding bowel defects causing similar problems?

Just because an issue is common in a syndrome doesn’t mean it doesn’t have a clear cause or that it’s unfixable.

Even some of her immune system issues and potentially even some of her balance and propioception problems were improved with the removal of that bowel defect (possibly because it was causing a Vitamin E deficiency!).

Of course, there are some things I’m glad we did and would do the same again. And this isn’t to brag, not at all. And it’s not to tell anyone else what to do. Some of this just happened to be things that worked out.

Pump Up the Jam. Pump it Up.

I pumped for 33 months. Thirty.Three.Months.

And I am so grateful that I was able to go so long and I am so grateful that I’m not doing it anymore.

Now, I had a lot of things going for me on this one, so this isn’t to hold it up for everyone as a goal. Pumping is not something that simply requires strength of will. There’s a lot outside of your control. A LOT.

But, I truly think this made a big difference for our daughter, especially with that hiding bowel defect that was causing such horrific malabsorption issues (breast milk is easier to digest than formula).

Go with the Gut

Before our daughter was born, we’d already been focusing on eating healthy and so I already had a lot of the knowledge to focus on her gut health. We moved into a Blenderized Diet as she grew, made sure to give her good probiotics, and kept her on a loose form of the GAPS diet for almost six years.

It’s hard to say how much all of this helped, but my gut (which is usually well informed with good research, thankyouverymuch) says it’s a big factor in why she’s doing as well as she is now.


Get it? Like the Daleks? No? Go watch some Doctor Who.

We’ve taken I guess what would be a considered a Total Communication approach with our daughter, though we didn’t really have a name for it. We just tried to see what worked for her with the complexity of her issues. Today we use a variety of methods including ASL, SEE, made up signs, Cued Speech, a communication app called Speak for Yourself on an iPad, speech, and whatever way our daughter could get us to understand. Like getting a DVD of one show because the previews show a clip of the show she actually wants. Smarty pants.

We’ve done our best to offer her a variety of options and then follow her lead.

Ain’t No Party Like a Homeschooling Party

‘Cause it’s perfectly catered to your child’s education party needs.

We have been very fortunate to be in a position where homeschooling was an option for us. I knew some homeschooling families before our daughter was born, but hadn’t seriously contemplated that path for our family until germ exposure really made the decision for us. I started with teaching our older daughter and absolutely loved it.

I’ve been able to adjust my methods for each girl and when you have a child with multiple disabilities, flexibility with methods is so important. Both girls are thriving and I’m enjoying it as well. Plus, the decreased sickness, more time together as a family, and a schedule set by what works for us has really impacted how our daughter is developing.

So there you have it. If I went back in time with the knowledge I have now, those are the things I would change or keep the same. I’m sure there are more that I’m forgetting, but since allergies have kicked up for our daughter and I haven’t slept in a week, well, this is what you get.

If I Knew Then What I Know Now

2 thoughts on “If I Knew Then What I Know Now

  1. As a Charge momma, this was unbelievably helpful and amazing to read! And had such powerful insights. I would do a lot of the same things differently. Thanks for one of the best things I’ve read in a long time!

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