Lessons I Have Learned From My Super Special Child
By: Kylie Tull
Tags: Disability, Life, Parenting, Life Lessons, Health

A mother’s journey with a child who doesn’t feel pain

Levi with his super cool helmet — image by author

Our Levi came into the world on 24th June 2013. He arrived in a very undramatic text book kind of birth, which in itself is quite out of character for this little fire cracker. He was an easy baby. The youngest of four children and the kind of baby that would go with the flow and sleep anywhere. We were amazed when at five months old Levi was able to zoom around the house in a baby walker. By nine months old he was running. At this point in our lives we were also busy with another toddler who had some unusual needs. Our daughter Savannah, only 14 months older than Levi, had been diagnosed with a rare medical condition called Congenital Insensitivity to Pain (CIP). This meant that she often had accidents and injuries requiring medical attention due to her lack of pain sensations. While we were very focused on Savannah’s needs, I was in complete denial and didn’t pay attention to the tell-tale signs that our happy little baby Levi was displaying as well.

Baby Levi in hospital — Image by author

One day, two of my dearest friends gently but firmly told me to get my head out of the sand and helped me realise that our baby boy wasn’t responding to pain sensations either. It hit me like a ton of bricks to realise that we had two toddlers with Congenital Insensitivity to Pain and not just one. Sure enough, this was diagnosed formally when he was 18 months old and became very ill with septic arthritis in his ankle joint. After a minor surgery, the doctors needed to cast his leg to stop him banging his wound on the metal cot. As with Savannah, nerve testing confirmed that he did not perceive pain in a typical way.

Image by author

The next few years were tough to say the least. With Levi’s highly developed gross motor skills and active personality, keeping him safe was a huge challenge. Whilst Savannah was sensible and able to make decisions that ensured her safety, Levi developed some scary risk-taking behaviours which kept us all on our toes. We could not let Levi out of our sight, so much of his time was spent strapped into a high chair or pram, or on my back in the Ergo baby carrier. He also had to wear a helmet due to his dangerous head banging. I remember one particular occasion where we had had a pretty good day, with Levi keeping his helmet on all day and then the minute I removed it for his evening bath, he fell and split his head open. I can’t really describe the feelings of failure and defeat that come with being unable to keep your child safe.

Interestingly, at the age of approximately three and a half years, both Savannah and Levi began to perceive some pain sensations. We were told that it had become a ‘patchy’ nerve connection so sometimes the pain signal was getting through and sometimes it wasn’t. It was tough watching our kids experience feelings that were entirely new and uncomfortable and there was certainly a transition period to a new kind of normal. Thankfully, Savannah transitioned well and is now a typical 8 year old and CIP is no longer an issue for her. For Levi, however, that has not quite been the case.

Whilst Levi can perceive pain more normally, the risk-taking behaviours have continued. At Kindy, he enjoyed climbing high up trees and leaping off the play equipment and we were very worried about him starting school. Thankfully, his school have been amazing and there have been no incidents of concern to report.

Then when Levi was 7, we moved into our new house. Our forever home. While it is a two-story house and has a pool, we were confident that the kids were safe and we laid down some strict rules when we moved in. One of these rules was no sliding down the staircase bannister. Unfortunately this was a hard rule for Levi to follow as his impulses and risk-taking sometimes cloud his thinking brain. Unfortunately child-safe and Levi-safe are not quite the same.

On Monday the 6th July, our son Jesse had some friends over for a pool party in the new house. This was a party for 12 year olds who were all safe in the pool area and supervised. Levi was told that he could go in the pool later that day but to let the older kids have their fun first. While this was going on, Levi was playing inside. As I prepared a snack in the kitchen, I will never forget the sickening sound I heard before running to see where it came from. I can’t describe the sheer horror as I looked over the staircase rail and saw my baby boy lying motionless on the tile floor below. He had fallen approximately 4 meters. The next 10 minutes are too painful to recount in detail but there are sights and sounds that will remain etched into my memory forever. Horrifying does not even begin to describe it. I don’t know if there is a word for what we have felt but I do know that my husband and I both thought that our beautiful little boy was gone.

The medical professionals we have in South Australia are amazing and Levi was taken great care of from the moment the ambulance arrived, after an agonising 8 minute wait. When transferred to Mount Gambier hospital, tests revealed a 9.9cm fracture to his skull, a sub-dermal haemorrhage and a fractured rib. Levi was airlifted to the Women’s and Children’s Hospital to undergo further treatment.

Image by Author

Levi’s poor brain was significantly bruised and took some time to recover from his fall. After his release from hospital it was still another 6 months before his coordination, speech and temperament returned to what it was before the accident.

I do know that this single event changed me. It changed how I think. It changed how I feel. It changed my behaviour. There are so many things I cared about before that just don’t matter now. I have heard many people talk about how a traumatic event can change you and I totally get that now. Life is so, so precious and can absolutely change in an instant. The silly worries that clouded my mind before no longer exist. I just don’t care. The things that truly do matter are clear and front of mind. I will consciously make sure it stays that way.

Lessons I have learned on our journey

Over the 7 years of Levi’s life there are many lessons I have learned about navigating the healthcare system, advocating for my child and also caring for my own mental health. I have had to become braver and bolder than I ever thought possible. I have discovered so much about myself and how much I can endure when there is no other option. Being Levi’s mum has been both challenging beyond anything I every imagined but also incredibly rewarding.

Whilst I am aware that our journey with CIP is far from over, here are the 4 key things that I have learned about parenting my special needs little man.

Doctors are not perfect. They are humans who do the best they can with what they know…and sometimes they get it wrong. I remember being told by one disbelieving doctor in an emergency room that he was going to prove to me that my son does feel pain. I still recall the look of shock on his face when Levi actually proved to him the complete opposite. I have learned that it is important to respect doctors but to also trust my instincts and speak up loudly when I need to. Connecting with families who know what you are going through is essential. As congenital insensitivity to pain is such a rare condition, we found that doctors weren’t always able to answer our questions as they were learning along the way as well. I was fortunate to be included in a support group for those who experience this condition and there advice has been invaluable. Be prepared for curve balls. I have learned that special needs come with complete unpredictability. Being flexible and adaptable is vital as you never know what is around the next corner. The last thing I have learned is that I never really understood the strength and power of the love I have for my children until that very moment when I almost lost one. The sheer terror of that situation will stay with me forever and I’m not sure if my heart will every fully recover. The positive side of this of course is that I have learned to let go of many things that used to cause me worry. I realise that the thing that matters most in the world is that my family is safe and well. Pure and simple.

If you would like to know more about Congenital Insensitivity to Pain, check out the links below:

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