#ForMaverick: The Life Of Baby Maverick Is One You Won't Ever Forget, His Parents & Community Will Make Sure Of It

There is an expectation that when you bring your baby home from the hospital, everything is going to be okay. You believe you are about to start the next chapter of your life with joy and love. Well, for the Willett family, this was not the case with their baby Maverick. Read about their rollercoaster journey in the words of Maverick’s father Joel Willett…

——————————

When we found out we were expecting a boy on December 4th, 2017, our joy was indescribable. We had a house full of girls, and finally adding a boy would help even things out a bit.

We never imagined that after finding out his sex, our joy would be followed by pain and confusion.

On December 22nd, Amanda got a call from her doctor asking us to come see him. He needed to discuss her pregnancy and it couldn’t be done on the phone. We rushed over as quickly as we could, with dread running through our heads. When we finally arrived and sat waiting for our doctor, he told us that our unborn son had congenital heart disease, but in order to know more, we would have to travel to SickKids for better imaging and a proper diagnosis.

Maverick, Amanda and Joel

From what our doctor saw, he thought that he had a condition called “Hypo-plastic left heart syndrome.” We did what anyone would do when finding out something was wrong with their child: we cried, we imagined the worst, and we googled what possibly could be wrong.

It was Christmas time, and we had to take this news and share with our family about what was happening and why we weren’t having a festive Christmas. It was a difficult holiday season to say the least.

On December 27th, we made our first trip to Toronto to the world-renowned Hospital for Sick Children (SickKids). We sat through hours of imaging and discussion with our cardiologist to try to make sense of what was wrong with our baby. We were given diagrams and discussed a variety of issues that were happening with our son’s heart. The doctor gave us a scale of possible outcomes that we could expect as we continued through the pregnancy.

SickKids was incredible to Baby Maverick

On one end of the scale, we had the aforementioned “hypo-plastic left heart syndrome” which would require a possible heart transplant. On the other, we were told it would only require a couple procedures to repair his heart and allow him to live a normal life. All we could do was hope and pray that his heart would grow, and he would only require minimal treatment.

We knew at this point we had to find a name for our baby that had meaning. Something strong that would give him strength to fight his heart disease. We landed on the name Maverick because it meant an independent man who does not conform to normality. It was perfect for our boy who was facing an uphill battle.

We spent the rest of the pregnancy driving back and forth to Toronto for imaging and to talk to the doctors who would be delivering Maverick. The plan was that they would deliver Maverick at Mount Sinai Hospital, and he would be transferred to nearby SickKids immediately where he would undergo emergency surgery to repair his heart—or, he would be put on support to help his heart do the work that was needed.

As we got closer to his due date, we became more and more worried about his birthing plan, being that we lived in Peterborough and Toronto isn’t just a couple kilometers away. We decided that the best thing to do was to have a C-section, so that we had a firm date of when we would welcome Maverick to the world.

When April 11th, 2018 came along, we packed up the van, kissed our two girls goodbye and ensured them that the next time we talked they would be big sisters to their new baby brother Maverick. We set out to Mount Sinai where we were expecting to deliver Maverick at 2 p.m.

It wasn’t till almost 10:00 p.m. when Amanda was finally taken in. Maverick was born at 10:22 p.m., weighing 8lb 6oz. What came next was not what we were expecting. Somehow, Maverick was stable. We couldn’t believe it, this meant we got to spend a few minutes with him before he would be taken over by the SickKids transportation team.

These few minutes meant the world to us. I was lucky enough to be able to go see him at SickKids that night and spend time with him after he was checked in and the doctors had a chance to examine him. Unfortunately, Amanda couldn’t come and spend that time with him, but the determination from her the very next day to be able to walk so she could go see him is unmatched. There was nothing in this world that was going to stop her from seeing her baby.

Over the next several days, we met with doctors, nurses, and his entire cardiology team. They said Maverick was doing better than expected and that emergency surgery would not be required at this time. See, Maverick was a fighter, and he was determined to get healthy. His heart continued to grow and continued to baffle the doctors to the point where they just wanted to let him grow. This was great news!

As each day passed, his odds got better that he would only require a bi-ventricle repair to fix the following issues with his heart:

·       Severe coarctation of the aorta with transverse and isthmal Hypoplasia.

·       Mildly thickened and hypoplastic aortic valve, possible bicuspid aortic valve.

·       Hypoplastic ascending aorta

·       Mild to moderate Hypoplastic left ventricle

·       Single left aided SVC draining to right atrium via a dilated coronary sinus

·       Probably perimembranous VSD

·       Petent forame. Ovale with mainly left to right shunting

There was nothing to call his condition. It was just a bunch of different conditions all attacking him at once. But Maverick was fighting—fighting hard.

Joel, Mya, Maverick, Kyleigh & Amanda

A month went by as Amanda stayed in Toronto at the Ronald McDonald House and with Maverick at SickKids, and I drove back and forth between work and them. It was an extremely difficult month. It seemed at times as if we were being told something different every day about his surgery.

Finally, we got the news that he would have a minor surgery to help address a couple of the issues. At one-month-old, Maverick had his first open heart surgery: a four-hour procedure where they would put a stent in his aortic valve and bands to control the blood from his heart. This meant Mav would be able to come home until his next surgery.

The time flew between his first and second surgery. We bought a new home. We began planning our lives again. We were happy. Maverick was excelling as a baby and hitting all the markers as if there was never anything wrong with him. For 6 months, it was like his heart condition never existed, except for the scar that he had on his chest.

Maverick was a happy boy, always playing and smiling. He loved to play on the ground with his sisters. Mya, the youngest sister, would be in his face trying to play, but he complained or cried. Kyleigh, the older sister, would always take care of him and spend her time with him every chance she could. Like I said, we were happy.

We were told his next surgery was scheduled for October 9th, 2018, two days before he would be 6 months old. We met with his doctors and nurses and we went over the procedure he was to have. It was to be an 8-hour procedure, but this would be the last surgery he would need, because in his short 6 months, his heart just continued to grow and thrive.

On the date of his surgery, we sat patiently in the waiting-room. When his doctor finally came out, he delivered us the news that Maverick’s surgery was a complete success and we could see him soon. When we finally got in his room, all we could see was our little boy laying there with what seemed to be an infinite amount of tubes and medicines attached to him keeping him alive. It was heartbreaking, but we knew that he was going to be alright. We knew that soon he would be home again.

Maverick only spent 10 days in hospital. Because he was such a fighter, he continued to get better and better. He was working overtime so that he could get better. When he finally started to wake up, he was sedated, and there was something different. That smile of his that was so infectious was gone. We could see he was in pain.

For several days we couldn’t pick him up, which made it only harder on us. Day by day, Mav would be taken off a different meds and his smile started to come back. He was off 99 percent of his meds and we got told that we would be able to bring him home. We were overcome with joy.

The girls and I drove up to Toronto on October 19th, 2018, finally ready to bring Mom and Maverick home for good. We said goodbye to the remarkable doctors and nurses who took such wonderful care of him (and Amanda) at SickKids, and who will forever hold a place in our hearts.

Our journey home began.

We pulled into our driveway at 4:45 p.m. We got all the kids in the house and now it was just time to be together and share as much love as we could. The girls got to hold him and share all the affection that he had been waiting so long for. Amanda and I got to watch our family be together again.

As the evening went on, Kyleigh went to a sleepover, Mya went to bed, and we got some mom and dad time with Mav. We settled Maverick to bed at his usual time and everything was good. Like normal, Amanda woke up in the night because he was fussing. He was having indigestion, so as a precaution she took him to the hospital to get a prescription filled that helped ease it.

When they got home, his cries woke me up and we spent time cuddling him and calming him down and back to sleep. We decided to do something that we never did: we brought him to our bed and let him sleep with us. We spent the night holding his hand and kissing his soft head.

Amanda woke up to him fussing at one point in the wee hours of the morning, so she patted his bum and he fell asleep. This was the last moment we know Maverick was alive.

Mya came strolling in to our room at 7:15 a.m. like any other day. She woke us both up and when Amanda laid eyes on Maverick, she began to scream.

Maverick was not breathing.

I had just taken a CPR course the weekend before, so I jumped into action and began performing CPR while Amanda called 911. Fire and Rescue was first on scene, followed quickly by the paramedics. They worked to bring Maverick back and rushed him to PRHC hospital. They were so supportive in their efforts while they tried to save Maverick.

When we got to the hospital, doctors and nurses were on hand to try and revive Maverick. I travelled to the hospital with the ambulance while Amanda got Mya off to her grandparents. Nobody in that room thought their day was going to start off this way. They worked on Maverick for so long. We had a family friend who was a nurse in the room and we could see that they were doing everything imaginable to save our boy.

The doctor told us to come close and hold him. It was time. We held him for the next 2 ½ hours. The hospital was quiet. It’s like we could read everyone’s minds. He was gone. And our lives would never be the same.

It was later discovered that Maverick suffered a massive heart attack in his sleep.

There was nothing we could have done to predict or prevent it. And being only 6 months old, there was no way he would have been able to communicate that something was wrong. Time stood still. To add to our grief, our phones were still going off from social media notifications from friends, family and complete strangers welcoming him home who had no idea what had just happened. Our Hollywood ending of bringing him home was now a tragedy.

There was a dark realization that we were going to have to tell our daughters—who we had promised them he was going to be alright—that Maverick was not going to be coming home.

Over the next week, we had to plan the one thing no parent should have to do. We had to plan our child’s funeral. We didn’t have life insurance on him, so this was going to come out of our pockets. That’s when Maverick’s Godparents made a GoFundMe page to help us cover the costs some. The amount of support that came from family, friends, and the whole community was remarkable. We were able to give him a funeral and his final resting place that he deserved.

They say that when you survive a child, there is no such thing as good days. There are only bad days and worse days. Let me tell you this is true. We wake most days with the thought of him being gone. We worry and lose sleep over the thought of something happening to one of our girls. It is a constant nightmare when you know you are awake.

Now, the holidays have passed, and we have done everything we can to stay busy, but there was something calling us to remember Maverick. So that is exactly what we are going to do. SickKids gave us six months with Maverick, and it was six months that we may not have received without them.

That is why this year, we are aiming to raise $65,000 for SickKids. But we need your help. Please consider supporting us and keeping the memory of Maverick alive by donating here. This one is #ForMaverick, and all the kids who receive treatment from SickKids.

—by Joel Willett

[Like the “ForMaverick” Facebook page and spread the word about this story on your social media channels]

Engage with us on social media on Twitter, Instagram and Facebook. Write to us at tips@ptbocanada.com. Sign up for PTBOBuzz newsletter here. Watch our PTBOCanada Love video here.