“In October 2015, our lives turned upside down and will forever be changed. We started a journey that has taken us on some unimaginable roads.
In 4 and a half years, our 7-year-old, Lilly, has had 28 brain and spinal surgeries, four infections in her brain, many complications, and a list of diagnosis that is still growing. We have had to travel to other states for emergency treatment from an experienced specialist. Lilly’s medical team consists of MANY different specialists to manage her care.
If you met Lilly in the street, never in a million years would you guess what she has been through in her mere 7 years. She has a smile that could light up any room and such fire in her belly, leaving me with no doubt she will do amazing things one day.
I share Lilly’s story and our journey as a family to hopefully help another parent or family going through anything similar.
My number one piece of advice is, ‘Listen to your gut. Mother’s intuition is very real, and it will never fail you or your babies. If you feel something is wrong, then it probably is.’
4 and a half years ago, my gut told me something was very wrong when Lilly started showing signs we hadn’t seen before. She was 3 years old and completely unable to sleep, due to waking all night long and screaming bloody murder in pain. She would pull out her hair and headbutt her bedroom wall in her sleep and beg me to make it stop. During the day, she was completely normal, a little clumsy but Lilly has always been a clumsy child.
I took her into the Emergency Room of our local hospital, with a very well looking Lilly. The doctors looked at me as though I was actually insane. Luckily, I had taken videos of Lilly. I showed them and suddenly instead of pushing me out the door, they ordered and Urgent MRI.
Lilly’s MRI showed she had Chiari Malformation and Syringomyelia, an incurable brain and spinal disease. Her brain is too big and falls down into her spinal canal. She had a fluid-filled cyst inside her spinal cord that was the entire length of her spine. Surgery was done very quickly, as she was having severe symptoms and had such extreme malformation and cysts.
This was done over 4 years ago and since then, Lilly has undergone 28 surgeries on her brain and spine. She has had endless complications and brain infections. Over the years, we have run into numerous situations and admissions where I have really had to fight for her. I have had so many meetings with so many doctors and specialists. I have had to beg for care for my very complex child.
In May of last year, Lilly had a 4-week admission to try and find out why she became so symptomatic. Doctors ran basic tests and came to the agreement there was nothing wrong with her. Lilly was discharged and again we were on our own. She has suffered and struggled every day since that admission. She suffers chronic headaches permanently, can’t sleep properly, and wakes up all hours of the night. She has had deterioration in her mobility and relies more on her wheelchair. She also suffers chronic pain in her legs and hips and has a very extensive plan to be able to attend school. She is also suffering from some incontinence.
Yet again, my gut was telling me something was being missed. She couldn’t be deteriorating without a cause. We got in touch with her specialist and traveled with her to Sydney to see an amazing specialist who has saved her life twice before when other doctors couldn’t find cause to help. The specialist has found Lilly actually has a Tethered Spinal Cord and after investigation, it turns out Lilly has had this condition since her original diagnosis in 2015. We were advised to travel back to our home hospital, and he would contact her doctor regarding the new diagnosis.
Recently, we have seen Lilly’s neurosurgeon. He apologized profusely, looked me in the eye, and told me I was right. He thanked me for pushing for answers, again.
Lilly will be having spinal cord surgery for her more recent diagnosis in the coming weeks and we pray it brings her some relief.
We have had four urgent situations over the years where I have had to fight so hard for answers. My child’s life depended on it.
It is truly soul-destroying to be so worried. You know, deep in your bones, there is something wrong with your child when the experts imply you are simply ‘overreacting’ or your child is ‘imagining’ the symptoms. But when you fight long and hard and find answers for your baby, the relief that follows is like no other feeling. The weight of the world being lifted from your shoulders when you can finally tell your child there is hope. I just hope one day, she understands how hard I have fought for her and how hard I will fight until I take my last breath.
My only wish for our complicated, and sometimes unfair journey, is to educate. I will share Lilly’s story wherever I can to gain knowledge and to share the mishaps and flaws so families don’t have to go through what we have.
Doctors are human and they miss things. It is a fact. They work horrifically long hours, have thousands of patients, and they can’t always get it right. But as parents, we have a duty of care to fight for our babies. We know our little ones better than we know ourselves.
If you feel something is wrong, then it probably is. Answers do come but we just have to hang on long enough to get them.
In my opinion, a mother’s intuition is definitely a built-in sixth sense.”
This story was submitted to Love What Matters by Michaela Antonelli, 31, of Australia. Follow her family journey Facebook here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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