Tracey Segarra must choose a surgeon when her baby is born with a dangerous heart problem.

Tracey Segarra is busy. She discovered storytelling later in life but has since embraced it with the fervor of an evangelist, performing in shows around the region and hosting her own show on Long Island, "Now You're Talking!" She is a 3-time Moth StorySLAM winner and a GrandSLAM champion. She had appeared live on the Risk! show and was featured on their podcast. All her storytelling adventures can be found at traceysegarra.com. 

This story originally aired on Sept. 22, 2017 in an episode titled, “Attachment.”

Story Transcript

Okay.  Let’s just get this out of the way.  I’m not a scientist.  In fact, my story is all about how I know nothing about science.  I’m totally uncomfortable with math.  STEM, I don't even know what STEM stands for. 

There are left-brain and right-brain people.  I still don’t know which one I am, but I’m the one that knows Broadway show tunes and that can write essays. 

I’m especially mystified by the human body.  Like I see skin, I have no idea what’s underneath or where anything is.  Just I trust in doctors and the medical profession that they know what they're doing.  For most of my life, this was not a problem because I was fairly healthy.  But then, in my mid-thirties, I suffered two miscarriages but then I became pregnant with twins.  I’m at the advanced maternal age of thirty-six so I am watched like a hawk throughout my entire pregnancy. 

You know, I grew up in the seventies, where doctors were like demigods.  Like Marcus Welby M.D. and General Hospital.  Doctors were smarter than me and my whole attitude was I just have to listen to them, they know what they're saying and don’t waste their precious time. 

I’m lucky because I have a wonderful obstetrician, but then I have a difficult pregnancy and I land in the hospital at thirty-two weeks with high blood pressure and I’m having contractions.  They're able to stop them, but they say, “That’s it.  You're in the hospital for the duration of this pregnancy.” 

So I sit there and I listen to everybody and everything’s fine.  Finally, it’s time for my babies to be born.  And it has to be a C-section because Baby B has her foot squarely under Baby A’s head, kind of blocking the runway, so it has to be a C-section.  But it’s a planned C-section. 

Finally, the day arrives.  As they're rolling me into the operating room, I’m suddenly seized with this terrible fear that something horrible is going to happen to my babies.  So I get into this hospital room and everybody is wearing masks and there's all these people I don't know.  I’m suddenly seized with this thought.  I think, This is elective surgery.  So I turn to my doctor and I say, “Can we elect to do this another day?” 

He looks at me and he just shakes his head and he laughs this big booming laugh.  And he says, “No, Tracey.  It is time to meet your babies.  Nothing is going to go wrong.”  He's this big doctor. 

So I trust him and I’m just like, “All right.  Nothing is gonna go wrong.”  So the surgery begins.

You know, I’m awake for this entire time.  I’m drugged, but I’m not out of it because it’s a planned C-section.  So my husband is sitting by my head and we’re just having this chitchat while there's this tent and they're doing whatever they're doing there to get my babies out. 

And what seems like three hours, but is probably only about forty minutes, finally, I hear my babies, Lily and Jessica, dueling banjo cries from opposite sides of the room.  It’s like du-du-du-du-du-du-waah.  You know?  When I hear those strong, healthy cries, I think, Ah, finally I can just relax and I can get on with just being a mother.

But the next morning they do all these routine tests on newborns, and they're preemies.  Lily’s only four pounds, Jessica is only five pounds.  So they do all these tests and they find a murmur in Lily’s heart.  They do further tests and they discover that she has a very serious congenital heart defect called tetralogy of Fallot.  If any of you listened to Jimmy Kimmel’s monologue a couple of weeks ago, that’s what his son was born with. 

Remember, I don't understand medicine.  This does not compute.  And this cardiologist at the hospital, who I've never met before, is telling me what’s wrong with my baby and he's describing it and it’s like Charlie Brown.  It’s like, “Wah-wah-wah-wah-wah.”  I don't know what he's saying.  I just know he said something about there's four things wrong with her heart.  That’s tetralogy.  And there's blood flowing where it’s not supposed to.  And there's areas that need to be patched.  It’s just all a blur and I’m just horrified when he's telling me what’s wrong with my baby. 

Then I’m even more terrified when he starts describing the open-heart surgery she's going to need in the next couple of months in order to survive.  And then I’m angry at God, mostly, for giving me this broken baby. 

You know, this cardiologist, this is the first time where I’m angry at a doctor because he's like smiling.  This guy is telling me all about the history of tetralogy of Fallot, how it was discovered by this French physician Dr. Fallot in 1888, and how up until fifty years ago there was no way to do anything about it, and isn’t that fascinating. 

And I’m a new mother, traumatized, you know -- there's something terribly wrong with my baby.  No, it’s not fascinating.  It’s horrifying.  And he's just going on and on, but whatever. 

So eventually, within two weeks, we’re able to take the babies home and the next couple of weeks are spent learning how to take care of infant twins, which is no easy task, I'll tell you.  And watching Lily closely to make sure that she doesn’t turn blue, which would mean that her blood oxygen levels are getting low.  To this day, I still don’t know exactly what that means, but it’s not good.  I know that’s not good and we would have to rush her to the hospital. 

So then the next test is interviewing heart surgeons.  Well, I can’t think of anybody less qualified to interview world-class heart surgeons than me.  My only experience with anything even closely related to this is dissecting a frog in the seventh grade and that frog was dead, you know.  So like who am I to ask these doctors anything? 

The first surgeon we meet wants to use Kevlar, the material used in bulletproof vests, to patch the holes in Lily’s heart.  And then the next surgeon we meet says, “Oh, there's no reason to do the surgery so soon.  You can wait ‘til she's a year old.  She had kind of a mild case of tetralogy of Fallot and she’ll be fine.  Wait until she's stronger, her heart is stronger and then we can do the surgery.” 

They're all saying different things.  I just want to scream like, “Would somebody else please make this decision for me because I don't know what to do?”  But I know deep in my heart, I’m a mother now and I've got this instinct that I have to get over my fear and my ignorance and I have to choose the right surgeon for my baby. 

Well, the next surgeon we meet is Dr. Q.  Dr. Q has the bedside manner of Vladimir Putin, on a good day.  On a good day.  I'll give him that.  And we haven't spent more than five minutes in his office when it is obvious to me that he just wants us out of there.  We are definitely wasting his precious time. 

When we’re interviewing all of these surgeons, like I said, I don't know what to ask them, but the one thing I can think of to ask them, the only thing I can think to ask them is, “How many of your babies don’t die?”  In the end, we choose Dr. Q because he may be rude and bum-rushed us out of his office, but he's got the best stats.  He's done more of these operations than these other surgeons and more of his babies live. 

When the day for Lily’s surgery arrives, she is five months old.  She weighs ten pounds and her heart is roughly the size of a walnut.  And I think to myself, How?  How can you operate on a heart that small?

But I have to put the thought out of my mind because otherwise I would not be able to hand over my child to this doctor who I barely know and don’t much like.  But I do because that’s what we have to do, then we wait. 

The surgery takes a few hours and finally we see her wheeled into the ICU and Dr. Q is there and he tells us that everything went exactly the way it was supposed to. 

But during the night there are complications.  Lily’s lungs fill with fluid and they have to intubate her and sedate her until her lungs can clear, and so we sit vigil by her bedside.  Every day we ask them, “Can you take the tube out?”  “Can you wake up our baby?”  And every day they say, no.  It’s just a waiting game and each day that she's intubated and her lungs are filled with fluid, she's getting swollen and she looks less and less like my baby, like I barely recognize her. 

But finally, things start to turn around.  And during all this time, Dr. Q came once to check on her and we never saw him again.  It’s like they hand it off to the ICU team.  Finally, after five days, they can wake her up and I can hold my baby again.  Then, nine days later, we’re able to take her home.  I am so scared when we take her home.  She's obviously still in pain.  She's got this like Frankenstein scar running the length of her chest and so I watch her closely.  After about a week, one morning I go to pick her up from her crib and she turns to me and she gives me this crooked little Lily smile.  It’s the first time she smiled since the surgery.  It’s only then that I know in my heart that she's going to be okay. 

Thirteen years later, we get invited to a gala honoring Dr. Q, and so we go.  At one point during the evening, Lily and I seek out Dr. Q so that she can meet the surgeon who had fixed her heart and I’m a little worried about this.  I don't know how he's going to react.  But we see him.  We say hello and Lily takes a picture with him and a hospital photographer captures the moment.