♪ Always be strong ♪ (upbeat music) - She was determined.

Determined to live.

- She was cancer free.

(inspiring music) - I feel like I was in really good hands and I can't say nothing about the treatment that I got.

- Things do change.

Nothing stays static.

A new day will come.

(inspiring music) - Welcome to "Hope is Here."

I'm Carla Hill.

Pregnancy is a time of waiting.

It can also be a period of great anxiety when the unforeseen occurs.

No one knows that better than Rachel Collins.

Early on in her pregnancy she was told there was concern for her unborn child as doctors discovered her baby's heart was undeveloped.

Soon expectations were dashed and a bright future for her baby was no longer guaranteed.

After the birth of her son named Mikey, a medical journey began which was filled with heartbreak, joy and a host of unexpected twists and turns.

This is the story of Little Brave Heart.

(gentle piano music) - Early in my pregnancy, they had found some indication that Mikey was having some issues.

We didn't know specifically what between a chromosome and a heart condition, but it was determined that he had hypoplastic right heart syndrome, which is where the right side of the heart is underdeveloped.

(gentle piano music) When he was immediately born, they took him directly to the ICU knowing that he would likely need some intervention.

He ended up about a week after he was born getting NEC, which is necrotizing enterocolitis, which was a manifestation of his heart condition.

And it almost killed him but he survived and we just kind of went down this journey from here.

(gentle music) He had a few stomach surgeries that ended in him having one third of his colon removed and it just weakened his heart to the point where it wasn't gonna make it with those repair surgeries.

When he was, I would say about four months old they decided that he needed a heart transplant.

I was devastated, I was devastated.

(somber music) Mikey, because he was so young.

He spent the good first year of his life laying in a hospital bed on heavy narcotics to help him with his pain.

Hooked up, so he didn't get to sit up, he didn't get to learn to eat, he didn't get to do any of those things.

Our goal was to keep him alive.

Say "hi."

With a heart transplant, you never know.

It's a positive outlook.

His biopsies have shown, positive results, no rejection.

We continue to monitor his blood levels for rejection often.

Hi, good morning.

And so it's a lot.

But we are hopeful and we live just each day to day knowing that he's a gift.

We wanna do so many things with him this summer.

Go to the zoo, do all the fun things with him because we never do know what it's gonna end up being.

Who is that?

Is that Mikey?

He now knows how to sit up.

He can't walk yet but extremely blessed to see the strides that he's making.

Stand for me!

Yep, good job!

My advice would be to never lose hope as long as there's life, there's hope.

(gentle music) - Rachel and Michael, thank you for joining us on "Hope is Here."

- Thank you for having us.

- Thank you for having us.

- You and your family have endured a lot over the past two years.

Rachel, what did you think when the doctors told you that after a series of tests there was a problem with your pregnancy?

- I was completely devastated.

You really hope just for a smooth sailing pregnancy.

And I remember walking out of the doctors that day and just completely shocked.

It just felt so surreal like it wasn't happening to me, and I was completely devastated.

- Rightfully so.

Michael, Rachel gives you kudos for being incredibly supportive at this time.

What were you doing to help calm your wife and help her think hopeful thoughts as she waited for nine months to pass?

- Just trying to be there for her.

It was one of those things that as the father you wanna be able to protect your family and protect him from harm and all that stuff.

And it was one of the things as a dad, as a father, that I couldn't tell you besides the Lord, it's just being there with her every day.

Her and our other kid.

Just telling her it was gonna be okay, lifting her up and everything.

- And Rachel, explain that for us.

Take us through the first three months.

- Absolutely, and I'm going to tell it to you in the best way that I know possible.

I am not a medical professional, but I'm going to tell you from my viewpoint what happened.

Mikey was born with hypoplastic right heart syndrome.

From what we understood, his right side of his heart was very underdeveloped.

He did not have a tricuspid valve.

And so these were all things where we knew he was going to have some type of repair surgeries.

Due to the fact that most of his oxygenated blood was going to his lungs.

Some of the rest of his body was starved for blood and his intestines weren't receiving the oxygenated blood that they needed.

And so he developed necrotizing enterocolitis which basically starved his intestines and bowels of the blood that it needed.

And quite candidly, necrotizing enterocolitis, which is also known as NEC, it kills most babies that contract it.

And so we were very, very lucky that Mikey made it through that time.

But because of that disease and the few stomach surgeries that followed, it really did weaken his heart.

- On top of everything, it was the height of COVID during this time.

So how did this complicate an already complicated situation?

- It was incredibly difficult, because we have an eight-year-old at home, who at the time was six, she couldn't come see her brother.

She met him maybe twice in the course of the 14 months that he was not at home.

Michael and I were really the only ones that were allowed at the time that Mikey was born.

And we have a village behind us, especially my parents, who are just wonderful, wonderful people that just jump on board with Mikey.

And I remember my mom and dad just sobbing and crying at home thinking, "I wish I could be up there, to be with you guys, and to be with him, and to help," because it makes for some very, very long, hard, stressful, devastating days.

- Mikey had eight operations in that first year.

That is incredible.

I learned there were many heroes to this story.

Mikey himself for being a determined little guy, friends and family that you mentioned for their support, and one particular doctor that's here with us.

So tell me Rachel about Dr. Boyle.

- Dr. Boyle is the man that saved Mikey's life.

I tell people that all the time.

Without him I do not believe Mikey would be living.

And we are just so grateful for him and for his team and for his expertise that he has given us along the way.

- And Michael, what are your thoughts on Dr. Boyle and this journey that he has helped you all through?

- There's probably times that we were annoying, especially to the doctors and nurses, and asking a lot of questions and all that.

And I'm sorry if I'm getting emotional a little bit, but he was very patient (stifles sob) with every aspect of it with us and with little Michael He was a very caring patient, all that.

- Very moving.

I want to introduce now Dr. Gerard Boyle, who is the pediatric cardiologist and the medical director of the Heart Transplant Program at the Cleveland Clinic Children's Hospital.

Dr. Boyle, tell me about the situation you walked into.

Describe the condition of Mikey when you were called in.

- We have patients with the hypoplastic right heart tricuspid atresia, and that's bad enough.

We know that they're gonna go through a series of surgeries on their heart.

We also know that they're at risk for this necrotizing enterocolitis.

It is a rare complication of this disease.

You know, I'm not the person, you know, this is a team.

And we could have gotten nowhere without Dr. Hani Najm, our chief of cardiac surgery.

He went in and put a band around the pulmonary artery to try to decrease the amount of blood flow to the lungs and force more blood out to the body.

Unfortunately, the necrotizing enterocolitis really set Mikey back.

It really was touch and go for a very long time.

Necrotizing enterocolitis causes infection in the abdomen, in the bloodstream, and that's what causes the demise of so many of those patients, infants, that get this.

So nursing him through that required, you know, changing his nutrition.

And so he was undernourished, and his heart wasn't functioning well, and his gut wasn't functioning well.

And that's, you know, at this time I walk in and see this really tiny, very, very ill baby, and you know, try to do our very best to bring him back from this really dangerous point and get him to the point where we can move forward with repairing this heart to the degree that we're able to do so.

- Doctor, what were you most concerned about when it came to Mikey's survival?

- I think the, um, heart disease itself we know we can get through a series of surgeries, but when there's a complicating factor that increases the risk for any kind of surgery because of the potential for infection, the inability to nourish properly, this makes every surgery, even the most routine parts of this repair, makes them very dangerous because healing becomes an issue when you're not able to nourish a baby properly, their healing is impaired.

And so any baby with tricuspid atresia, you know, those first couple of months are scary for everybody.

You add on another complicating factor and it was pretty scary for a long time.

- So let's talk about the transplant.

At what point, Rachel.

were you told your son needed a heart transplant?

- We had, as Dr. Boyle mentioned, really been through a lot his first few months trying to really keep him alive.

And there was just so much uncertainty in that time in those first few months.

And then it all boiled down to this meeting that was going to occur.

And the outcome of this meeting was we're either gonna choose the transplant or we're gonna choose to do these repairs.

All of these minds are gonna come together and make this decision, you know, we will let you know.

And so here we are on just pins and needles, just terrified, nervous, hoping that God guides the minds of all of these people in this room.

And then afterwards they come out and they say "we have opted to go the transplant route."

It was terrifying but it felt relieving and refreshing to finally have some type of answer, if that makes sense, because we have just faced so much uncertainty up until that point.

- Rachel and Michael, before the transplant, as hopeful as you were, didn't something happen just before the transplant?

You talked about uncertainty.

Can you go into that a little more?

What was going on with Mikey?

- Absolutely, Mikey had just reached a point where he was very, very sick.

He was very inconsolable.

Mikey was in a lot of pain.

His heart was very sick.

He hardly could muster up the energy to even cry even though he was in distress.

At one point they had moved his room down to by the nurses station and at the time we were just very unaware because they are very caring in so much that they want to be careful with giving us any bad news.

But it turned out they really did expect him to code at any time.

He was that serious.

And they were looking into putting him on a ventricular assist device, which is a heart device to keep his heart beating until the transplant came.

And I remember they had decided, yes, we're gonna do this.

And Dr. Najm coming into the waiting room, and we're just all waiting on pins and needles.

And he looked at me and he said, "I'm really really happy that we did this now because he was very sick.

His heart would not have made it."

- Mm, Dr. Boyle, how risky is a heart transplant for an infant?

- When I was, when I started in this endeavor, we didn't have assists devices for infants and we would put patients on the transplant list and we had a lot of patients die waiting for hearts 'cause it takes a while.

You know, we've developed the expertise now to know when it's time that when the heart is not gonna make it, to move ahead and put in an assist device.

Once that assisted device goes in, I feel pretty confident we can control things and get the patient to transplant.

Yes, there are complications possible, bleeding and infection, but when they're on an assistive device, generally we can take a deep breath, relax a little bit, and spend some time nourishing the baby, making sure that they're strong enough for the transplant surgery.

Honestly, I think the, the most difficult time in a heart transplant surgery in this case is making sure that Mikey was under anesthesia and we were breathing for him.

Once that happens, you know, we have an assist device to allow Dr. Najm to get into the chest and into the heart.

And you know, I've known a lot of surgeons over my time when he starts operating I know we're gonna do well.

And so that really wasn't for me, that was not a high drama time.

We were gonna do this transplant and we were gonna get this baby out of here.

And so I think the decision to go to an assist device was probably the harder one, the decision, and the timing of the transplant.

I think by that time we were pretty ready to go forward and pretty confident we were gonna get out.

- Amazing!

Rachel and Michael, what happened after the transplant?

- Mikey just came out, this brand new little boy.

He was very warm to the touch all the time.

We, in our experience with him, he would get cold or kind of bluish gray.

For the first time ever he was warm and pink as little babies should be.

He would start babbling and laughing, and we got to hear his little voice because he felt like it.

His heart was strong and he would even cry.

And I remember from his birth up until the transplant, the goal was, "Hey, don't have this baby crying.

His heart can't take it."

Well now Dr. Boyle saying, "Let this kid cry.

His heart is strong, you know, let him use it."

And so just a complete difference, night and day difference from what we had experienced with this child from the beginning.

- And again, Rachel, this was a stressful but a very hopeful time because your son was given a second chance with a new heart.

You, however, have mixed emotions as this heart was being taken from a baby who had died.

Tell us about that.

- Initially when the words transplant came up and it, well let me say this again.

Initially, when the words heart transplant came up in my mind I knew that meant that some other human being would not be living who was giving that to Mikey.

I truly did struggle with that idea for a while.

It was really hard for me to stomach the idea that not only would another human being have to pass away, but likely a very tiny human being because the heart had to be the size of a child to fit into Mikey's chest cavity.

I struggled with that.

But the longer that I was able to process it, the more that I realized this child did not die for Mikey.

It was a very unfortunate situation, but because of the kindness and just selfless love that the parents of that child have, that child's legacy now lives on inside Mikey.

- Will you even meet the parents who gave Mikey his heart?

- I would absolutely love to meet those parents.

We have already started the process of reaching out to Life Bank to see if they would be willing to meet.

We really want them to listen to Mikey's heartbeat and hear how strong it is and how they gave him just a second chance at life.

And I really want them in some way, whether it be big or small, to just be a part of his life.

- Dr. Boyle, this brings up the importance of organ donations.

Can you expound upon this subject for our audience?

- Yes, I think that, as Rachel mentioned, this is a selfless act.

They are going through the worst time in their life, but what makes it a little bit easier to bear is the fact that their gift will let someone else live on.

And in the organ donation part of medicine, we don't just take a heart, you know, that baby gives a heart and and kidneys and in some cases lungs and liver.

So many, many lives are impacted.

And I think the families I know that have donated that brings them solace.

It doesn't take away the pain, but it really does make a difference in their lives and obviously in the lives of the donor recipients.

Yeah, I've not met a family that regretted donating.

- Doctor, how is Mikey doing today?

- Yeah, Mikey is a normal little boy.

I mean, it's, yeah, you know, this is really, I've said this many times, "it's what gets me up in the morning."

You know, my chosen career is one in which not everybody survives and not every day is happy.

And you know, I see somebody like Mikey and he is doing so well.

If you didn't see the scar on his chest, you wouldn't know.

And you know, that's the juice, that's what gets us up in the morning.

That gives our lives meaning.

- I can imagine!

Dad and mom in your eyes, how is Mikey doing?

- He's doing fantastic.

We are just so elated seeing him with our daughter Ella.

The bond that they share is just absolutely beautiful.

She's mothering him here at home.

He is happy.

He just learned to crawl.

He actually bunny hops everywhere now.

And so he is discovering parts of the house.

He's doing all of the boy things and I'm terrified in that way, (laughs) but I'm very, very excited because he is just so happy.

He smiles, he babbles, he talks, he crawls.

He is just developing so well and we just could not be happier.

- Michael, what did you learn through this ordeal and this health journey with Mikey?

- Is one thing, it's before he had the heart transplant, one of the things they said that the journey that the process that he was gonna go through and what his plan was, the surgeries he was gonna get.

They were saying, you know, he was gonna have limitations.

He wouldn't be able to do certain stuff as he got older and stuff like that because the way his heart, the route he was gonna go.

But once he got that transplant, they said he doesn't have limitations.

He can play, do professional football, he can go and do Olympics, he can do whatever he wanted.

And so just to see where he came from and look at him now, (sniffles) It's exciting.

I look forward to what he does, what he's going to do.

And it's...

I'm just very happy and proud of where he's at and like I said, I look forward to what he is going to do.

- You should be proud, Michael.

What will you tell Mikey when he grows up about this very tenuous time in his life and as he gets older?

What do you want him to take away from this second chance episode in his life?

- I think just explaining this journey and how much he has inspired and instilled hope in people that in the negativity that you can see around and some of the bad situations that do occur, there can be little sparks of hope in all of that.

And I remember at one point during Mikey's journey, I went to a very dark place.

I was very scared and my father looked at me and he said, "Rachel, where there's life, there is hope."

And I want Mikey to know that his story and everything that he's been through, not only has he been greatly blessed but he has blessed just so many people around him.

And I just want him to know that he was a hero without even knowing it at the age of seven months old.

- Thank you all.

Thank you Dr. Boyle.

Thank you Rachel.

Thank you Michael for joining us and sharing your courageous story.

And of course he's probably in bed or causing mischief with his sister, I don't know.

But we want to thank Mikey as well and I wish you all good things.

Keep growing and thriving and staying hopeful.

Take care everyone.

Thank you so much for joining us today.

(upbeat music)