Patrick's Story

Patrick Scott Marvel was born on April 27, 2022 at 12:19 PM. In what we now know as "true Patrick fashion," he thought he would throw us some curveballs throughout my labor. I had intense contractions that lasted well over 72 hours before they would admit me to the hospital. Once we finally got admitted, I pushed for five hours, they attempted to vacuum him out twice, and he ended up arriving via C-section. Once Patrick was Earth side, we had 12 weeks of newborn exhaustion and bliss.

The first week of August 2022, shortly after Patrick had turned three months old, we noticed he was having some weird arm and leg movements- almost as if he was doing crunches. It happened randomly, probably three times a day. I did what all new moms should never do… got on Google. What I found was concerning and the YouTube videos that I found were exactly what I was seeing at home. We went to the pediatrician, who after conversing with a few other pediatricians in the office, told us these movements were probably just some leftover newborn reflex. My gut told me otherwise but I went with it. Thankfully I had videoed the movement, and they were willing to forward it to a neurologist at Children’s Hospital Colorado for a second opinion. We went on with our day and went out to dinner with some friends, and while at dinner I saw a random phone call coming through and my heart sank because I immediately knew where this was going. It was the neurologist at Children’s Hospital, who told us we needed to get to the ER as soon as possible. I will never forget his words… “Time is of the essence. Drive safe, but hurry.” We did just that, and after the long process of getting admitted, we were up to the neurology floor and a nurse began attaching an EEG on Patrick’s head- 25 little electrodes glued to his head overnight.

The next morning, the neurologist came into our room. She told us that Patrick had something called "infantile spasms"- exactly what my Google search had led me to the days prior. Infantile spasms is a rare but extremely serious form of epilepsy. The neurologist proceeded to tell us the EEG showed that the seizures were only coming from the right side of his brain, and that side had some really wacky brain waves. The left side looked great, but they wanted to do an MRI to see if they could figure out what was going on on that right hemsipshere of his brain. Another moment that I will never forget- they had me sit in a wheelchair and hold Patrick as they wheeled us down the long, sterile hallways of Children’s Hospital to the MRI floor. Sounds dramatic, but I felt like I was in a nightmare waiting to wake up and I was praying that was the case. We got to the MRI floor and they told us that you could not have any metal on your body if we wanted to go into the room with him. I had some permanent bracelets and a necklace soldered on that I couldn’t take off. In that moment I could have cut them off and gone into the MRI with Patrick, but I firmly believe that was God's way of telling me not to. I let Brendan go into the MRI and I am so thankful I did. They put Patrick in a little tube and he screamed for about 20 minutes. They needed him perfectly still, so they let him scream himself to sleep. Definitely a dad job, and I'm so thankful Brendan took one for the team there.

The MRI showed that Patrick had a stroke at some point. They said that based on the imaging on the MRI, it looked as though it had happened a while ago. Either in the womb, during delivery, or shortly after. We will never know when it happened, and although it doesn't matter, I will always wonder. It's something I think about multiple times a day. Patrick's stroke team at Children's said "it was likely a complete freak accident." They also told us that 1 in 4000 babies have a perinatal stroke, and every human's highest chance of having a stroke is during delivery. Our delivery wasn't exactly short or smooth, so we definitely aren't ruling that out.

Side note, our quick visit to Children's Hospital had turned into a three day ordeal. As you all know, all of our immediate family is local, and somehow this weekend EVERYONE was out of town. I was still in a maxi skirt from dinner two nights ago and I wasn't comfortable sending Brendan across town to go home and get clothes, so he ran to the Target down the street really quickly to get toothbrushes, toothpaste, and new clothes. When he got back we changed, only to realize he had left the security tags on every item of clothing he had bought. So we walked around Children's Hospital for two days with huge red plastic security tags on them. It was one of those moments when we looked at each other and could either laugh or cry, and thankfully we have gotten pretty good at leaning on the laughter.

So, we are sitting there at Children's and we now know that our perfect little three-month-old son had a stroke and now has a form of epilepsy. Where do we go from here? We learned two things rather quickly. #1, unfortunately, the stroke was a "done deal." There was no saving the brain tissue that had been damaged- the damage was done and there is nothing you can do to reverse that. Therapy is your best line of defense to try and teach the other parts of his brain to adapt and take on tasks that it typically wouldn't have to. And #2, seizures are no joke. They are considered a medical emergency, and every single seizure that is had means more brain damage is occurring. The stroke quickly became the least of our concerns, and getting his epilepsy under control was immenent. Step number one was to stop the seizures. The first line of defense was to put him on prednisone...A high dose of a very strong steroid. The hope was that this one round of prednisone will stop the seizures forever. He started the prednisone and the seizures stopped within 12 hours. (I use the word seizures, because that is what they technically are. However they aren't what you're imagining. Like I said earlier, they were super subtle movements). The plan was to be on this intense steroid for one month- two weeks of a very intense dosage then slowly weaning off. We learned rather quickly that steroids make you hungry, they make you angry, and as our doctor said, “he is going to feel like there are ants under his skin for the next four weeks." There really is no other way to put it, it was hell. It was a long four weeks of an angry baby and we watched our baby get bigger and more swollen by the minute. It was heartbreaking to watch, but he wasn’t having seizures and we were willing to do anything it took. These pictures go in order from August 4th, to August 21st, to September 3rd. He got so big, so fast.

This was definitely the most challenging few weeks for Brendan and I. It felt as though our world had been flipped upside down. My parents, who live less than five minutes away, moved in with us to help with the screaming baby all night, but more than anything we needed them to talk us off of a ledge multiple times a day and assure us it was going to be okay.

Two weeks into the prednisone, Patrick had another EEG. It showed that the prednisone was still working. No seizures were seen. We were thrilled and so hopeful. We had another one two weeks after that as we were weaning off the steroids. This time, the EEG showed that his seizures had returned. They looked quite different though… Rather than him doing a crunching motion, his eyes simply would roll to the left for less than two seconds. We were facing the heartbreaking news that he had failed his first medication, his best shot at overcoming infantile spasms. (And no, you cannot "grow out" of infantile spasms. They just become bigger, scarier, and with every seizure, there's a higher chance of brain damage being done).

The first week of September we transitioned into the next medication, which took a little bit longer to kick in. Perks of this medication? Less swelling and no hangry baby. Side effects of this medication? Has the potential to ruin his peripheral vision forever. This means we had to visit the eye doctor… Have you ever tried to dilate a four month old's eyes? And then keep them awake long enough for the eye doctor to do their exam? Turns out eye exams are hard when you're fast asleep. Another few appointments of a screaming baby and a tortured mom and dad. (And a hot mess of an eye doctor who had to google what she was looking for, on her phone right in front of us 🤦🏼‍♀️)

P started this medicine in the beginning of September and he can be on it for nine months to a year. Fast forward to the end of November, we met with our neurologist at Children's who we love dearly. It was time to start preparing for next steps in the event that Patrick fails this medication. The next best option is brain surgery. Sounds crazy, but when she said that we were weirdly relieved. We knew the medication route wasn’t working and wasn’t permanent. Since he had failed the prednisone, we knew his chances of any other medication working were very small. Spending the rest of his life hopping around from medication from medication, waiting for him to have a seizure, was our worst nightmare.

When she said that, Brendan and I both felt such a relief. Brendan asked "why wasn't this our first option? We feel like it really is the only permanent solution to this and we feel as though it could have been done months ago." Turns out its standard practice, that you have to fail two medications to even contemplate surgery. At this point, we were under the impression that the surgery entailed going in and removing the abnormal brain tissue that had formed post-stroke.

We left that appointment all on the same page. We were going to get everything ready on our end and the hospital was going to get everything ready on their end to prepare for surgery, so that if he were to fail this medication, we could immediately have surgery without having to go through this process. To get approved for surgery, two things had to happen:

1. Our neurologist had to present Patrick's case to a board of neurologists and neurosurgeons. They looked deeply into his imaging, scans, EEG's, etc to determine whether or not they thought it was the best option. 7 out of 7 of them voted that yes, surgery is the next best option. We felt assured that all of them came to the same consensus (apparently 100% voting yes is unheard of).

And 2. He had to get a PET scan. He had to go under anesthesia, and they injected radioactive material through an IV that then lit up the parts of his brain that were functioning properly, so the surgeon knew what to remove.

We had checked all of our boxes and so had they. At our next appointment, our neurologist told us that they believe that although he hasn't failed his medication yet, it was time to proceed to surgery because his wacky brain waves were proving that it was only a matter of time until his seizures return. Fully trusting in them, we agreed. We set up an appointment to meet with the surgery team on January 9, 2023.

This was a long appointment. We met with our neurologist, the rehab team that would help him post surgery, a neuropsychologist, and the surgeon. They came in one at a time, gave us their talk, and then the next person would come in. The surgeon was last. When she came in, she broke the news to us that rather than just removing the abnormal brain tissue, they wanted perform a surgery called a hemispherectomy. A hemispherectomy is when the surgeon completely disconnects 1/2 of the brain. Since the right side of his brain is causing issues, they want to go in and completely disconnect it. They will leave the tissue in there but essentially unplug it so it is not functioning or connected to anything in his body.

That right there was enough for us to process for one day.... But the surgeon had to go into detail to tell us what to expect, because the assumption was we were proceeding to surgery rather quickly after this meeting. Like within a month.

Some other bombs dropped on us that day-

• he will have a scar from the front of his forehead to the back of his head, then wrapped around his ear (the shape of a giant question mark)

• 85% chance he'll need a blood transfusion during surgery

• He'll be in the ICU for a week

• Slim chance of him living an "independent life"

• This surgery is rare; they do 3-4 per year. Our surgeon wasn't exactly reassuring when talking about how many she had performed herself

• A lot more but I just started crying and blacked out the rest of the meeting

Thank goodness for Brendan, because he carried the rest of this appointment out. I had heard enough and once again, that sick feeling returned to my stomach. I'm telling you I have puked and cried more in the last nine months than I have my whole life! When we got in the car the first thing Brendan said was "I don't know how anyone leaves that appointment and thinks, yeah this is a great idea, let's do it." And I agreed. I had a horrible gut feeling, and my gut has proven to be spot on time and time again. If there is one thing I have learned the last 10 months- it is that mama gut is REAL. Do not ever question it. We didn't know what other options were out there, but this one wasn't it.

I think the hardest pill for us to swallow was that we believe Patrick is overall doing great. We haven't given him a chance- he's been on medication since he was 12 weeks old. Disconnecting half of his brain is a very permanent thing, and he really hasn't proven to need that extreme of a solution yet. Or at least we didn't think so.

The next few days were filled with lots of tears and just trying to process all of this information. We also began to research some options to go get a second opinion elsewhere. With the help of incredible family members with connections, we landed on two places to get a second opinion; Texas Children's Hospital in Houston, and Lurie Children's Hospital in Chicago.

Two weeks ago, the three of us headed out to Texas Children's for an overnight EEG. The purpose of this was for them to get an idea of Patrick's imaging and brain waves, and see if they would recommend the same surgery. When you have an EEG, they place a video camera and record you 24/7 so they can catch any abnormal movements. (Yes they also can hear you, and no that does not stop Brendan from inappropriate jokes. I had to give him the death stare like ten times). We are pros at EEG's by now; that was actually Patrick's 9th EEG since August. Talk about a trooper. Anyways, they determined that Patrick was indeed having seizures overnight, unbeknownst to us. We saw the brain waves alongside the video footage, and his brain waves would spike and his little body would very subtly flinch throughout the night. This was the clarification we needed that he had officially failed his second medication. They agreed that the hemispherectomy was his best bet at seizure freedom.

Before we left, their neurosurgeon came into the room. We immediately had such a good feeling about him; he was smart, caring, genuinely wanted to help. He was experienced, something we were unsure of at Children's Colorado. We left feeling optimistic and comforted that although the surgery is daunting, we have found a much better option than our original.

We came home, and decided we still wanted to go to Chicago to meet their team before making any decisions. We decided we don't need any more medical evaluations on Patrick, some of the best pediatric doctors in America have determined this is what's best for him, and we agree. At this point, it is solely a decision for Brendan and I to decide who we want to do it. This past weekend Brendan and I flew to Chicago for one night and left P at home. We got a Parent's Day Out, and full night of sleep maybe for the first time since April!

Monday afternoon we walked into Lurie Children's Hospital to meet with their Chief of Pediatric Neurosurgery. (There's a sentence I never thought I would say). Dr. Sandi Lam, who had just finished performing brain surgery an hour prior, came and sat with us in a conference room for 2 1/2 hours. She told us everything we could ever want to know. What would happen prior to surgery. What she does during surgery (she literally pulled up P's MRI and walked us through step by step). What he will look like and act like immediately after. What to expect that day. That week. The rest of his life. She's a mom to 4-year-old twins; she gets it. She fully gets my mama heart and my fears and my hopes for P and his life. I cried (per usual) at the end of the meeting, but this time they were tears of joy and relief. I told her that this was the third time we had had this conversation- once in Denver, once in Texas, and now here. I full heartedly trust Patrick's life in her hands... and that says a lot.

Oh, and the best part about Dr. Lam?! She does the surgery ENDOSCOPICALLY. Patrick will have a 4cm scar on his head, she will go in with a camera and complete the surgery with minimal blood loss, minimal trauma, minimal pain.

Now you're all wondering- what will Patrick's life look like? Although we really won't know until we know, Dr. Lam said...

• he can't be a fighter pilot. He will have vision and will be able to see, but he won't have left peripheral vision in either eye (essentially he will have 50% vision).

• The vision issue can impact his ability to drive. We are banking on self-driving cars by 2038.

• He won't be a good violinist, as his left hand will struggle with fine motor skills for the rest of his life (who needs a left hand anyway?)

• Other than that, the sky is the limit. She has past patients that play soccer, run cross country, are in grad school.

• Yes, Brendan asked, and yes, he can golf

So, here we are, with the happiest, cutest little guy that is going to live the rest of his life with 1/2 of a functioning brain. (By the way, Brendan and I know WAY more about brains and their anatomy than we ever wanted). Brains are incredible, they can reroute themselves to learn things. And when you're only 10 months old, there isn't much to re-learn post surgery. Patrick's brain is just going to learn how to do things a different way. From what we know, and what Dr. Lam said, there's a good chance the left side of his brain has taken over most function at this point anyways.

We are heading back to Chicago next Sunday, March 5. We will be in and out of the hospital doing some pre-surgery evaluations, and surgery is scheduled for Thursday, March 9. We promise to update as often as we can. As always, thank you for your prayers. We know that your prayers are the reason we have such peaceful hearts going into this. We are SO looking forward to a seizure-free, medication-free Patrick here in just a few weeks!