So You Have a Brain Injured Baby

When Charlie was first home from the hospital, I was desperate to know what I should do with him. People were telling me that anything was possible, but I’d seen the pictures–Charlie had a L-OT of brain damage, and I wanted to get crackin’. Only one problem: it was hard to find any information about what to do with a brain-injured baby.

So, for all the people who may wind up here because they Google “brain damage” and “baby,” here’s my list of five things I recommend you do. Remember, I’m not a doctor or a therapist–just an in-the-trenches mom. Discuss any plans you have with your doctor.

  1. Enjoy your child. All babies are very, very similar and I am angry at myself for not truly enjoying Charlie when he was small. Most babies eat and sleep and need short periods of stimulation. If your child is going to be disabled, you have plenty of time to deal with all of that. The itty bitty baby thing lasts for a very short time–enjoy it, snuggle, and breathe in the baby powder scent.
  2. Put your kid on his/her belly. This is good for typical kids and non-typical kids. When Charlie was very small, he had a feeding tube, so we put a nursing pillow under his arms to make sure he was comfortable. Putting you child on their belly helps them develop arm and neck strength, which will be really useful when they decide they want to move.
  3. Stimulate the five senses. I could tell that charlie’s vision had some issues even when he was still quite young, so I used a flashlight to stimulate pupillary response. Maybe that’s a little gung-ho, but black and white images are great for any kid. And kids have five senses! We also played classical music (before he discovered Lady Gaga), encouraged him to feel interesting textures, and let him smell fresh ingredients in the kitchen.
  4. Start trying to introduce the concept of cause and effect. It’s a basic building block of learning and making connections. We started with Charlie by saying, “ready, set, go!” and then pumping his legs like he was running. Anything will work. Just get your child used to the idea that the world is logical.
  5. Try to encourage independence. Make no mistake, Charlie is pretty disabled. He couldn’t lift his head off the ground until he was four months old. He was at least seven months old before he could grasp anything in his hand. He wasn’t able to sit on his first birthday. We started encouraging independence at a young age, though. We dangled toys millimeters from his hands, I laid him on top of toys so his movement set them off, I did everything I could to give him chances to entertain himself. These days Charlie has a stubborn streak a mile wide–he WILL figure it out and NO, he doesn’t need your help, thankyouverymuch!

So tell me–what advice would you give a new mom for helping her child grow and develop? I’d love to hear from regular moms and special ones.

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  1. Such great advice! I've also talked about not enjoying Max when he was little, because I was so worried about him. I have a couple of things to add, one of which a well-known pediatric neurologist recommended to us after Max was born. It's also something you should discuss with your doctor. We give Max an omega-3 supplement called Coromega; omega-3 oils are supposedly good for brain health. I also think repetition is super-important; kids with brain injuries need to be told and shown again and again how to do something. Oh, and this falls into the obvious category, but I'll say it anyway: get your child as much therapy as you can—physical, occupational, speech, aquatic, hipotherapy. And FIGHT the insurance company to pay for it; I have fought them mightily and won. Katy, I know you're not the biggest fan of traditional physical therapy, but I found an amazing PT and I know that Max wouldn't have walked as soon as he did if it weren't for her.

  2. The number one piece of advice that I could tell you is to just breath and look for the good things, the little things, that make you both happy. You can see all the hard things easily enough, but relish in the small things, because it is the small things that make it all so amazing.

  3. That was great advice, I especially like the "enjoy your baby one" which sounds the simplest but may end up being one of the hardest!

    I am an "in the middle" mom, Noah was born with a brain injury but has continued to develop typically these past 2 years. My advice back than was a lot of tummy time and stimulation through books and pictures…not sure if it did any good but that is what I did and a lot of it!

    Now that I am pregnant again, fingers crossed for a delivery sans brain injury I am sure I will be neurotic and do mostly the same stuff, and hopefully this time around I can enjoy my newborn without all the added "drama"!

  4. Get an oBall. They cost less than ten dollars and they are very light and have lots of holes so they are easy to grip. Its a great first toy for any child.

    We came to developmental delay and therapy late so my advice in that area is, if your child is slow to develop then ask for a referral to EI. An assessment will either put your mind at ease or get vital services started early.

    No matter how hard it is, take photographs and enjoy every moment.

  5. Katy, can we compile all these and make a book? A roadmap to life with special kiddos? Wow, I believe we could fill up your comment box, on this one! LOL! We are on board with Ellen's idea 'bout the Coromega, Faith's used it for about 4 years. Also, I would say…to celebrate like rock stars….every single, tiny accomplishment! For Faith, it was a big encouragement thing, the more we scream and yell and dance the more she repeats what she did!

    Oh and become an expert, of course, outknowledge the doctors in every area you can!

  6. Ellen–it's not that I'm not a FAN of traditional PT–I just think that Charlie needs more than just that.

    Candace–celebrate like rockstars? I love it.

  7. Being a mom of an extra-awesome kid ~ my advice would be: have an outlet. A hobby, time with friends, work out time, time away. Don't feel guilty about it ~ it will help maintain mental health!
    When mom is best ~ she can help her child be their best!

    Katy, I love this post!

  8. Great list Katy! I agree with all five of your recommendations (as well as the ones commenters have left). I felt the same when we came home with Elijah…where was the information on brain-injury? I wanted to read, but there really wasn't much to read, especially in the form of books.

    I'd add that it's okay to grieve. If your child has brain damage, you too have suffered through some kind of trauma. It's how you deal with the grief that's important. Don't let it interfere with point #1- Enjoy your child. Find someone you can talk to, without abandon. It might be your husband, your mom, your best friend, someone you met online, a psychologist. Find that someone who will listen to you without judgement and with understanding. The goal should be to move forward, so that you can enjoy your child. Take life one day at a time, celebrate every accomplishment, and remember to take care of yourself. :)

  9. All great advice so far! Too me, the most important would be what you had already mentioned about enjoying your baby. I spent so much time worrying about diagnoses, getting therapy, not doing the right things, and missed milestones that I failed to enjoy the baby things. You are right, you will have forever to deal with the diagnoses but only a brief period for that child to be a baby.

  10. Celia and Leo says:

    Great post!! I'd agree with Ellen and say repetition…but, also, KIS…Keep it simple! With my typically developing daughter, I would walk around the house saying, "mommy is steadfastly heading to the white refrigerator, slowly opening, grabbing cold milk with my right hand…etc". With my little Leo…Open Fridge, Get Milk, need cup….over and over and over. Once he picks that up, I add on.
    Also, just always focus on the positive…it is a huge reason why I LOVE YOUR BLOG!!!!!!!!!!

  11. I was lucky enough to realize when Eli was a baby that – ALL babies eat, sleep, and poop – and so I just enjoyed him as that for the first four months :)
    At 5 months old he had his G-tube placed and that was scary, then he started early intervention therapy and I started realizing how different he was. All my friends baby's could do so much at 6 months, and Eli was the same baby I brought home from the hospital as far as motor skills. I got pretty sad thinking about things at that point and the realization hit that my son really IS different.

    My biggest piece of advice is that special needs kids need to learn self-coping skills, too. I knew right away that I didn't want Eli to be a super clingy kid that I could never put down or walk away from.
    He would have a fit, and when I went down the "checklist" to make sure everything was all right (fed, changed, etc) I would just go sit on the front porch and let him cry in the house for a few minutes.
    I needed a time out! :)
    I knew he was safe in his bassinet or on a blanket (unable to go anywhere) so I never worried about his safety.

    I think this was great for him. He's the best kid ever! :)
    and it was good for me, so I didn't get too stressed out.


  12. They're all great ideas, both yours and those of other commenters. I especially love the reminder to just enjoy the "itty bitty baby" stage.

    I think all of the ideas you posted fall under the same umbrella of "doing what comes naturally for your baby's age regardless of disability." A while back you wrote about being aware of certain milestones that Charlie wasn't going to be meeting any time soon, and you described how you would get down on your hands and knees and do those activities FOR Charlie. Things like opening up kitchen cabinets, knocking over stacks of blocks, etc. I absolutely loved that post and really appreciated reading your enthusiasm and energy in teaching Charlie and just plain enjoying time with him!

  13. I would say that you should ask for help. My husband and I had our baby in a different country, and we had no network of friends or family to look to, and we suffered. If you have people around to ask, then ask for help so that you can take a nap, or a shower, or get out of the house. Also, talk *a lot* to your baby. I talked almost non-stop to my baby. I narrated life to him… I told him everything I was doing, and how I was doing it. I pointed things out to him, and today at 2 1/2, although he cannot roll over, sit, eat, talk etc, he is an incredibly bright boy who understands everything and can even spell 5 letter words. Never underestimate. Even when it seems like nothing is being absorbed, it is stimulating their brain to hear language, and it helps them understand their world. We also played lots of classical music for him.

  14. Awesome post Katy! It's an interesting topic and one that I didn't deal with. I really had no idea that anything was "wrong" with Ben until he was about 6 months old so I guess maybe I should be grateful that I got to enjoy the baby stage?

    I think all your adivce is great…and when they get a bit older get them around "older" or typically-developing children. They are the BEST motivators!

    Ben is lucky to have Daniel around. So even though Ben couldn't crawl into the kitchen and go through the kitchen cupboards, Daniel did. And then of course Ben wanted to too. So we'd bring him over and they'd "explore" together.

  15. With Caleigh we were in a survival mode until she was 1 with all of her surgeries and medical problems. So we were pretty much robbed of the normal baby time anyways.

    But I will say that the first step in enjoying your child is to take the time to Unsubscribe from those stupid weekly babycenter or wherever emails about your childs development. I remember cringing at the sight of them. I finally unsubscribed and felt better for doing so.

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