In this week’s episode, both of the storytellers share stories about moments when life just wouldn’t let up.

Part 1: After giving birth to her second child, Julie Raskin doesn’t know how to handle his constant crying and need to nurse.

After Julie’ Raskin’s son Ben was born with congenital hyperinsulinism (HI), a condition that causes the overproduction of insulin that leads to severe hypoglycemia, Julie joined a dedicated group of parents whose children were also affected by the condition to found Congenital Hyperinsulinism International (CHI). Julie is the CEO of CHI and since 2010 she has led this active worldwide community of patients, their families and caregivers, expert clinicians and researchers, and professionals in the biotech field to fulfil CHI’s mission to find better treatments, prevent death and brain damage, and support HI families every step of the way.

Part 2: As a new immigrant and surprise cancer patient, Emmanuel Paul navigates the complexities of the US healthcare system.

Emmanuel Paul is an immigrant from Haiti. He is a Journalist. A cancer survivor. Emmanuel is a graduate student at Harvard Division of Continuing Education. He graduated in Accounting and Finance at Northeastern University. He also hold a double bachelors in Anthropology and Sociology at the Haiti State University. Emmanuel is the founder of CaribbeanTelevisionNetwork, an online news media serving immigrant communities from the Caribbean in the United States.

Episode Transcript

Part 1

It's a gray June morning, June 2nd, 1996. I'm nine months pregnant. I'm going to go into labor soon. I'm feeling really good.

I'm a confident mom. Confident because I already have a kid. I have Hurricane Hannah. She's two years old. She has that funky nickname because she's like the April weather she was born in. One minute she's sunny and then she's storming. She gave me so much confidence as a new mother. She knew exactly what to do when she came out. “Here I am, Mom. I know how to nurse. I know how to grow.” And she did. It's why I'm feeling so good this morning.

Then later in the evening, the late evening, I'm giving birth to Ben. It's after 11:00. We're in a hospital in New York City and Ben comes out. He's funny. He's got one eye open, one eye closed, but Mark, my husband says, "Julie, he's different. He's calm. Look at him.”

And there he is, all swaddled in the newborn blanket. He's just a bundle of deliciousness.

We go up to the newborn nursery, to the room where Ben and I are going to spend two days and two nights and it's this huge room. There are seven mothers and seven beds and seven babies and seven bassinets. We're all paired off. Ben starts to nurse and it starts out great, but soon he's very voracious. He's not wanting to take any kind of a break. I pull him away from my breast so that he can rest and he doesn't want to. He's crying and he's irritable. This just keeps going on.

I look around at the other pairs, the mothers and the babies. Some are nursing quietly and others, they have bottles, but they take breaks, they take rests, and they all seem to be in this perfect rhythm. But not Ben and me.

Then it's morning and we've been up all night. I'm so exhausted. I've just given birth. He's supposed to sleep sometimes, but he doesn't and he's still crying and wanting to nurse.

Then the visit begins. Hannah comes, Hurricane Hannah with my husband Mark and my mother‑in‑law Grandma Helen. Hannah runs to the bed to meet her new baby brother, her sweetie. She jumps in the bed and he's crying and she doesn't care at all. In fact, she seems like she's kind of reveling in the fact that he's crying and she's now the perfect older sister.

My mother‑in‑law is not happy. This is not the grandson she was expecting. Crying. “No, something's wrong,” she says. “Babies don't act like this. They don't cry that much. We have to get some attention.”

But Mark and I, we defend our newborn baby Ben against my mother‑in‑law. We say, “He's fine. He's just normal. Some babies are like this.” But she's not okay. She's pacing. It's an awful visit.

Finally, they leave, and Ben and I are alone in this weird, weird rhythm. He's still crying and wanting to nurse all the time and I'm feeling like, “No, my mother‑in‑law is absolutely right. I was faking that big time. Something is wrong.”

Just then, my OBGYN comes in to see how I am. I'm like, “How I am? Let's talk about Ben. He won't stop nursing. He's crying all the time. I don't know what's wrong.”

She picks him up and she rocks him and she says, “This is a perfectly normal baby.” I'm so relieved. He's relaxed, he's quiet, we're going to get some rest.

Then she goes and the crying begins again. He's wanting to nurse and I bring him back to my breasts. Then a nurse comes by and I ask her, “Something is wrong. What can we do? What can we do about this?”

The nurse says, “Well, sometimes babies have low blood sugar. I'll give you a bottle with some sugar water.” She gives me the bottle and I give it to Ben and he slurps it up.

The next thing I know, it's morning and I'm so happy. I feel so rested. I look at Ben and he's still sleeping. Yay, we slept. But then I look at the clock on the wall and it says it's nine in the morning. I think, “Wait a second. That's impossible. Babies don't sleep through the night their second night of life.”

And I worry. What is going on? This is really bizarre. First, we have this extreme hunger. Now, we have this sleep.

I try and rouse Ben and I bring him again to my breast. He won't nurse and he's just sleepy.

Then Mark comes to bring us home and there's discharge. We're in the car, in my mother‑in‑law’s Toyota Tercel that we've borrowed and I'm in the back seat with Ben He's in his car seat and Mark's driving. And we drive to our new house. We've just moved in two months earlier. It's an 1865 brown shingle farmhouse where we're going to start our perfect new life with our daughter and our son.

We go in the back door into the kitchen and there's a cake on the kitchen table. It's a chocolate cake and it says, "Welcome to the world, Benjamin!" And I melt.

And Hannah, she comes running into the kitchen and my mother‑in‑law, Grandma Helen. Hannah is so excited and she just gives Ben a big giant kiss. He's still in his car seat and my mother‑in‑law is so happy that he's asleep. He's not crying and all of her fears are gone.

We eat the cake and it's a little bit of sweetness and it relieves me. I'm feeling okay. Maybe this nightmare is going to end.

But then that worry comes back and I do what I do. I go to my books. I go into my library and I find the book I'm looking for. It's by the British psychologist Penelope Leach, Your Baby & Child. I search it and I find a paragraph that gives some answer to what's going on here. It's a paraphrase but it says something like this.

“Some babies are very tired when they're first born because they don't like colostrum. This is the first milk a mother makes. They're waiting for the more mature milk to come in and so they sleep through those first few days.”

Wow, there's an explanation for this. I'm overjoyed. But then it's morning again. We've spent our first night at home and I realize Ben didn't nurse again. He slept through the night.

I look over at the bassinet and I look at my sweetheart, my little newborn Ben. His eyes are closed but his mouth is doing something very funny. It's making weird smoke ring‑like movements, little O's.

And I say to Mark, “Mark, something's wrong.” Mark looks and he agrees.

We rush to our new pediatrician in New Jersey's office, get in the car and we're there. She sees us and she sees Ben and she says, “You have to go to the neonatal intensive care unit at St. Barnabas. It's very nearby.” She gives us directions.

We're driving there and I'm so worried. I feel somewhat validated, because this has just been such a strange few days and it's good to know that he's going to get some medical care, some medical help. But I'm so worried.

We get there and we're in the waiting room. A nurse comes for Ben and they go back through the double doors that automatically close into the neonatal intensive care unit. It's like a wall, a wall that separates me from my newborn, from Ben, and I feel so much pain.

We wait together, Mark and me. Finally, the doors open again and a doctor, a very elegant doctor wearing a white coat and high heels and she has a Hungarian accent, she asks me and Mark if we're Ben's parents. We say we are.

And she explains to us that Ben, his blood sugar didn't register upon arrival and he had seizures. Mark and I just look at each other. And she says Ben is going to have to stay. They're going to have to investigate why he had this hypoglycemia.

He stays, and he stays for seven days. Over the course of these seven days, we learn that Ben has had a brain injury from prolonged hypoglycemia. Finally, on the seventh day, we learn from a pediatric endocrinologist who explains to us what Ben has. Ben has congenital hyperinsulinism. It's a disorder that strikes newborns. It causes the overproduction of insulin, which causes severe hypoglycemia. The brain and the body need sugar to grow and develop and Ben is going to need a treatment to stabilize his sugar.

So we enter this new world. He's going to be hospitalized and go to a center of excellence where he's going to be for months.

This news just sits with me and it sits with Mark. I think back to that very strange rhythm that Ben experienced when he was first born, those first few days with his nursing and then his lethargy and it all made perfect sense.

Well, Ben's grown up. Ben is 28 years old and he's a lovely, wonderful human being. He's full of energy. He calls it "Benergy". And he's ready for any challenge.

He does live with disabilities because of that brain injury. He's legally blind, he has motor coordination issues, he has epilepsy, and he has learning disabilities. But he's a really strong, independent, amazing young man.

Nevertheless, I think back to that brain injury and I know that it didn't have to happen. There's a very simple blood test. It costs pennies. It can be done at the bedside. If only, when he was first acting so differently from the other newborns, when he was so voracious, if only a medical professional had come and checked his blood glucose level, his ketone levels, we would have known that Ben had a condition that was causing this hypoglycemia.

They could have intervened. They could have given him an IV glucose, because this is appalling that this could happen. It's appalling that the fate of a newborn is in the hands of a postpartum mother who doesn't understand the signs her newborn is giving her, that he's not getting the sugar he needs. It shouldn't be on her to save his brain.

Part 2

I am an immigrant from Haiti. Prior to 2010, I turned down three offers to come to the US, not that I didn't like the US but I thought I was young, had my time, and I was a journalist busy doing things.

In 2010, I wanted so badly to come and the US Embassy turned me down three times. My then girlfriend was pregnant and I didn't want my daughter to be born behind me. But in August 2010, that was the worst day of my life when my daughter was born and I was in Haiti sitting down crying like a baby, but I could not be there. I tried everything I could to come to get them, because I remember I never spent a day with my dad and I didn't want to give my daughter this kind of life.

I was finally I awarded the visa in 2012 and came here. When I first came, I thought it was very good for me to have some kind of background in the US, although I already had several degrees in Haiti. So I applied at Bunker Hill Community College, major in Accounting and Finance, taking full‑time classes that my wife paid for me.

And I was sitting at the library at Bunker Hill doing some homework when one of my accounting teachers came. He never talked to me before, never picked me to answer any single question in class.

He said, "Mr. Paul, why haven't I seen you as a student registered for my class next semester?”

And I said, "Well, health insurance is too expensive for international students, so I would have to pay $2,500 as a full‑time student and it's almost the price of the semester, so I don't have this money."

Emmanuel Paul shares his story at MIT Museum in Boston, MA. in March 2024. Photo by Kate Flock.

____ [02:26] told me what? “This is what you do. Just go to Boston Medical Center. Tell them you are sick and they will give you health insurance for one month. And just come here. All you need is just a number and then put it on the computer and everything will be waived.”

I said, “Really?”

He said, “Yes. That's what I used to do when I was a student.”

I did not spend any minute. I went to Boston Medical Center right away to emergency room. The nurse asked me, “How can we help you?” But I could not see anything wrong to tell them.

And there was a very tiny bump on my neck and I thought it was like a birthmark. I thought, “This small bump bothered me a lot and I am worried about it.”

They sent me to a room, drew some blood samples and asked me to wait.

It was now more than six hours waiting. Nobody contacted me.

When a doctor finally passed by, I called, “Doctor, doctor, what’s going on? Why don’t you send me home? I'm not even sick.”

The doctor said, “If you are not sick, why did you come here?”

I said, "I just need health insurance for my class."

Then the doctor said, "Do you know that that's a crime?"

I said, "Yes, but I need it."

And when the doctor came back he said, "Well, Mr. Paul, I'm afraid you might not be going home today."

I said, "Why?"

He said, "We saw some abnormalities in your blood test and we think we need to diagnose you further.”

So I stayed at the hospital for several days. They sent me to ENT and ENT took some further blood samples. And they sent me to a female doctor to give me the final result.

When I went to see the doctor, she came with some bodyguard behind the door but very, very subtle so I don't see.

And she said, “Do you speak English?”

I said, “Yes.”

“Do you need an interpreter?”

I said, “No, I don't.”

“Are you sure?”

“Yes.”

“I have some bad news for you.”

“What is it, doctor?”

“We figured out that you are diagnosed with a very rare type of head and neck cancer. It is a very aggressive cancer. In most cases, it will kill you within six months. If we try the treatment, the treatment might even kill you before the disease itself.”

I sat down for a while looking at the doctor and she said, "Are you okay?"

I said, "Yes."

"Do you understand?"

I said, "Yes."

"You didn't say anything."

I thought I did not say anything not because I was so brave, but I didn't know what to say at this time.

And I said, "What would you like me to say, doctor?"

She said, "No, but are you sure you understand English?"

I said, "Doctor, we have been speaking here for a good 10 minutes. Don't you understand what I'm saying?"

She said, "Yes, but usually patients who get this kind of bad news, they freak out, crying."

I said, "Can I ask you some questions?"

She said, "Yes, sure.”

“If I cry, am I going to change the outcome?"

She said, "No.”

“Am I going to live longer than six months?"

She said, "No, not necessarily."

And I said, "What's the point of crying?"

And then now she sits down crying in the corner.

She said, "That's a good spirit," and she sent me home.

It was now more than two months. Nobody ever called me. When I got home, I didn't say anything to my wife. I never gave the bad news, so kept waiting.

After about two months, I received a phone call. “Boston Medical needs you tomorrow.”

I say, “What? Okay.”

I went to Boston Medical Center. The only thing they did is draw some more blood samples and then they sent me home.

I say, “What? They have me wait for more than two months and that's what they did. What's going on?”

And while I was at Massachusetts Avenue going to take the orange line, the receptionist called me, "Mr. Paul, Mr. Paul, Dr. Nina wants to see you quickly."

I quickly opened my backpack and say, "Maybe I've stolen something from the doctor's office."

I didn't want to go. The train was almost coming and I said, “Maybe I can come tomorrow.” But I decided I was going to just go back to see what the doctor is going to say.

Then when I get to the doctor's office, Dr. Nina said, “I did not pay much attention to your lab tests. They’re worse than I thought they are. Bureaucracy at Boston Medical Center is very, very terrible so they might not even start the treatment for you and you might be dead before that.”

She said, “Here's what I'm going to do for you, but I didn't tell you.”

I say, “Okay.”

“You're going to sit here. I'm going to leave you in the room. Just pretend to be dead and we will do the rest.”

I say, “What?”

Now, the first time, the professor asked me to pretend that I was sick. And then now, the doctor asked me to pretend that I am dead. Am I going to die for real?

She left the room and then she came back, “Mr. Paul. Mr. Paul. Mr. Paul, it's me, Dr. Nina. You don't have to play the game with me. I am the one telling you that." And she said, "Yes, that's what I meant."

And Dr. Nina said, "Code red, code red."

And within a couple of seconds, there were about 15 people in the room, doctors, nurses, other people. They sent me to East Newton, for those who know Boston Medical Center.

The next day, I was scheduled for surgery, I was scheduled for chemotherapy, I was scheduled for radiation. I got 18 cycles of chemotherapy, 35 radiation, I got three surgeries.

I went back to the hospital to see Dr. Nina. It was at 6th floor, Room 2B. I asked the receptionist, "Can I see Dr. Nina?"

They said, "No, we don't know Dr. Nina."

I didn't insist because I didn't want them to think that I was insane, so I didn't go to the hospital anymore.

But I took one of my final exams two days after I did my first surgery, I got to assist with the birth of my second daughter. They are in the room.

And I graduated from Bunker Hill, graduated from Northeastern University, admitted at Harvard Division of Continuing Education, got to work at Pricewaterhouse Coopers as public accountant, and created my own small business, Caribbean Television Network.

Although they don't know who is Nina, but everybody knows who is Dr. Timothy Nancy Gardner, all these people at the Boston Medical Center who took care of me.

There are people in my country who get diagnosed with cancer in stage one. They die because there is a lack of healthcare. We don't have radiation. We barely have chemotherapy. So there's no other country this story could have been true.

And no need to tell you that I did not die like the doctor said, but it's only because of the US.

Thank you.