“Little Man” fights to recover from surgery

Family and doctors work to get answers

 

TRI-CITY AREA — The long journey to recovery for one-year-old Mark Alan Michael Rogers is one he and his family are not walking alone.

Hundreds, if not thousands, of people continue to lift the family up in prayer and support following the infant’s brain surgery in January.

In the way of an update to a story the Tri-City Times first published in January, Mindy Rogers (Mark’s grandma) and his mom, Taylor have been giving updates through social media each step of the way.

Baby Mark was diagnosed with infantile spasms back in June of 2024. With quick thinking the issue was caught fast and treated as quickly as possible.

Mark’s parents, Taylor and Kyle, rushed Mark to McLaren Lapeer, where they were told the spasms were just “infant jerks.” An hour later, with the episodes continuing, the Rogers family headed to Flint Hurley Hospital. They ended up going to Detroit Children’s Hospital before getting some answers.

As soon as Mark, better known as “Little Man,” was hooked up to the EEG an hour later, a neurologists said 100% it is Infantile Spasms. Mark was put on a high dose of steroids that immediately stopped the spasms.

He had an MRI a short time later, showing he unfortunately had a stroke when Taylor was around six months pregnant.

He was weaned off the steroids and put on an anti seizure medication called Kepra. His EEGS all came back “normal” (considering the stroke) and he was spasm free! About a month and a half later the spasms returned and he was admitted back into the hospital again where he was put on new medication which could potentially affect his vision.

Mark spent a week on that medication and his mom says it was not working so he was then put back on steroids along with the Vigabatrin. The spasms once again stopped.

“In between all of this chaos, he was diagnosed with cerebral palsy. (spastic cerebral palsy is what they call it),” Taylor shared.

She added “While we were in the hospital the first time, the neurologist had mentioned brain surgery but he told us that would be the last possible thing if nothing else worked.”

When the spasms came back after treatment, family asked his main neurologist if brain surgery would be an option for him, she told us absolutely not, he would not need it and the medication would work. We would just have to give it time.

We pushed for her to bring up Mark’s case to the neurosurgeon at Children’s Hospital just so we had all our options open. Little did we know, a few days later we would be told baby Mark was the top candidate for the surgery his neurologist said he would most definitely not need.

The neurosurgeon explained because of his stroke that no matter how much medication or time has passed his spasms would continue to come back.

Taylor explained the situation, saying, “Because of the stroke he had, over half of his brain on the right side does not work at all. The part that does work on the right side is what is causing his spasms and would eventually later on down the road cause epilepsy.”

The procedure that’s being done on baby Mark is called a right Hemispherotomy, where they disconnect the entire right side of the brain so the left can take over (which it is already starting to).

With the surgery, family said Mark would eventually become spasm, seizure and MED free! He will still need a lot of therapy, he’ll be delayed in a lot of the activities he does and he’ll more than likely always walk with a limp, but family is hoping and praying the surgery does exactly what it was suppose to do.

Here are excerpts of “Little Man’s” progress as shared by the family on their social media page.

FEB 5 – “Little Man” has to be put on oxygen when he sleeps because his levels drop below 90%. They can’t give us an answer as to why this is happening. They scheduled him a sleep study for tomorrow night because he may have developed a form of sleep apnea. We’re praying it’s nothing serious and it resolves on its own.

FEB 7 – Little Man’s sleep study came back, he does not have a form of sleep apnea but there is something going on in his brain stem that’s always been there but was, I’m assuming, suppressed before the surgery. They have more testing they have to do, but as of right now the only thing we really know is worst case scenario he will be needing a trach. We are all praying that will not need to happen though.

FEB 10 – Baby Mark’s sleep study revealed that he has both sleep central apnea and obstructive apnea. As a result, he has been moved from the therapy floor to the ICU to be fitted with a BiPAP machine. We hope this will prevent the need for a tracheotomy to address his breathing issues. Tomorrow, the kids will meet with the doctors, and we should receive more information.

FEB 10 – Just had a doctor come in and tell us that little man does in fact have both forms of sleep apnea, obstructive apnea and central apnea.

We will be going down to be fit for BIPAP in ICU, if he can’t handle that our last option will be a trach. We will be talking to neuro about how this just came out of nowhere and if this is a side effect from the surgery.

I (Taylor) almost feel like having this surgery was a mistake on my part. We have had more problems now than we did before the surgery.

Makes me sick I did this to my child and I can’t help but feel guilty I was the one putting him through this.

I pray the BIPAP machine works and this will be the last thing we will have to worry about.

FEB 14 – (From Mindy) “Our little Valentine is still being a trooper, but mom and dad are worn out due to the lack of progress and communication within the hospital system.

Baby Mark is in a regular room with no therapy until the pulmonary team clears him after a sleep study on Tuesday.

So far, he hasn’t tolerated his BiPAP machine for two nights, and the pulmonary team hasn’t provided any suggestions or solutions.”

We will continue to follow the recovery journey of Little Man and all of his family.

If you would like to help the family with any donation at all, you can go to Facebook and type in “Baby Mark’s Journey” for more information.