Mighty Maddalena? You got that right. Welcome to our world where we have daily therapy appointments and follow-ups with neurology, neurosurgery, orthopedics, and ophthalmology. Maddalena is a sassy, fun, and loving five year old.

Maddalena came into this world fighting. She came via emergency c-secion at thirty-one weeks due to placental abruption/preeclampsia. She weighed three and a half lbs and doctors did not think she would make it after such a traumatic birth. With an apgar of ZERO at birth, it took them four minutes to get an apgar score of three. After spending eight weeks at Florida Hospital for Children’s NICU she has proven doctors wrong left and right.

Maddalena suffered a bilateral grade three intraventricular hemorrhage from her traumatic entrance. Brain bleeds go from grade one to four. Her bleed caused a diagnosis of ventriculomegaly. What is ventriculomegaly? Yeah, I said the same thing when they told me her new diagnosis. Ventriculomegaly is a condition in which the CSF-filled structures (ventricles) within the brain become larger than normal. You can have mild, moderate, or severe ventriculomegaly. In Maddalena’s case, she is classified as severe. The main concern with ventriculomegaly is that children can develop hydrocephalus if pressure builds up and fluid is also found around the brain. This would call for a shunt. Luckily, in her case, by the grace of god, she did not develop pressure or hydrocephalus. She remains diagnosed with static ventriculomegaly (stable).

Now where does cerebral palsy come in? Well, because Maddalena suffered oxygen loss at birth she suffered some damage to her brain. It is not 100% for sure, but her neurosurgeon assumes she may have a few small PVL’s that can not be seen on her imaging. Her neurologist says he does not see any PVL’s on her MRI’s. (Periventricular leukomalacia is a form of white-matter brain injury, characterized by the necrosis (more often coagulation) of white matter near the lateral ventricles.) The concern with PVL is cerebral palsy. She is diagnosed with spastic diplegia cerebral palsy—dystonia type. This means that her tone in her lower extremities can be normal and high within minutes. It varies really. Maddalena was diagnosed at 17 months with cerebral palsy. A lot of people ask me how she was diagnosed so early. Typically, CP is diagnosed later on. Well, in our case, because of her traumatic birth and brain bleed, she was already at a high risk for CP. It was kinda a wait and see game for a while, but she slowly started showing more and more signs of having CP. Some signs that Maddalena had/has:

• Delayed motor or movement milestones (rolling over, sitting, standing) 

• Strabismus (Could be from CP or genetic. It is unknown really.)

• Failure to Thrive (She had this as a baby, does not have it currently.)

• Abnormal Muscle Tone- Stiff Muscles on and off (hypertonicity)

• Speech Delay

Maddalena has mild cerebral palsy. CP can vary from mild to severe. If you suspect your child may have some signs and symptoms of CP, please discuss it with your pediatrician and get a referral for a child neurologist.

You may notice Maddalena wearing glasses in some pictures. Maddalena is far sighted and without her glasses has strabismus. (eye turn) It is likely due to the brain bleed/CP, however mama, daddy, and brother all have vision deficits, so it also could be genetic. Her vision has improved (with vision therapy!) although it is a constant battle to keep those little purple glasses on.

On February 2, 2020 Maddalena had SDR surgery that was extremely successful! Please see the SDR tab above for more info. At four years old Maddalena was diagnosed with autism, intellectual disability, and epilepsy.

I know it all seems scary and the truth is, it is scary. I remember the day her neonatal doctor came in our NICU room and broke the news that scans were showing a grade three bilateral bleed. She discussed all the possibilities. She said Maddalena may be severely handicapped. Maddalena may never walk or talk. I cried so hard at that moment that I couldn’t breathe. For the next year it was a wait and see game. When we finally got answers and a diagnosis, I sorta felt at peace. I could now focus on her therapy and what tools will help her best.

Therapy, the best part! Maddalena is in occupational therapy, physical therapy, speech therapy, and music therapy. She graduated from vision therapy at age five. Currently she is using AFO’s and walks with supervision.

About Mama

I am Kayla Madeline— a thirty something year old, geriatric occupational therapist gone stay-at-home mom. I graduated in 2010 with a degree in occupational therapy and have worked in a skilled nursing facility ever since. I did stop working when Maddalena came, due to all of her medical concerns, but my heart and soul is in the medical field and occupational therapy. I have to admit, being a geriatric therapist for so long, I am slowly becoming the pediatric therapist I never thought I’d be. I thank my daughter for that. She has taught me so much.

I just want to let other parents know. I get it. It’s hard. It’s scary. But, what I’ve learned throughout this crazy journey is to cherish all of the little things. The milestones. The laughs. The happy tears. Seeing your child smile. It’s truly amazing.

I truly hope that our journey gives other parents help and hope. Help as far as providing our followers tools that help us. Hope that their children will be OKAY. Never stop believing and know that miracles do happen, everyday.