the vaccine war

Interview: Alvaro and Myrian Fontan

“It lasted at least two more months after we got out of ICU. She still have the cough, and she will keep on having the spells and everything.”
Alvaro and Myrian Fontan

They're the parents of Vanessa, who was just 40 days old -- too young to have been vaccinated for pertussis -- when she became extremely ill with the highly contagious bacterial infection, commonly known as whooping cough. This is the edited transcript of an interview conducted on April 2, 2010.

When did Vanessa first show signs of sickness?

Alvaro: Our daughter was a little over 30 days old. She start having like a normal cough and a cold, looks like a cold. We took her to the doctor or pediatrician. She was too small to get any vaccines at the time. ... We visited doctor's office probably easily four, five times in two weeks. We were feeling like something was going on, but the doctor felt that we were over-worried because we were like first parents at the time. Every time that we visit the doctor, the doctor will say, "It's the croup or a simple virus or," you know. The doctor will give us some things to try, like open the window a little bit, or bring her to the shower when it's steamy, and take her out of there, and just the change of temperature will help her. None of that work, much.

And in the very last week, she started getting worse every night. We were having these spells, and she would stop breathing basically for long period of times, like 10 seconds. And in a little baby, you know, when you can count 10 seconds, it's like counting minutes in an adult. And we started like really being worried. Every night it was like we were not sleeping and we were just basically the whole night holding her a little with our arms or something, so she will sleep through the night and breathe easier.

I came from work on Monday, and I remember that it was around 5 p.m., and she had another spell. This time she turned totally blue. She stopped breathing and we didn't know what to do to have her breathing back again. I took her outside, you know bring her back, she wasn't responding. And then she suddenly start breathing again. I called the doctor and says like, ''Tell me that this is normal. I mean, she's turning blue.'' And the doctor, when I say ''blue,'' she was like, ''No, that's not normal. You need to go to the emergency room.''

We went there. They were not prepared to take little babies like that, less than two months old. They tried to put an IV [intravenous line] on her. She was too small. They actually called a chaplain. They thought that she was not going to make it. She was having spells.

They finally call an ambulance and were able to move the baby to a children hospital. And the minute we walk into children hospital, Dr. [Cynthia] Cristofani, she told us, ''That's whooping cough.'' ...

We didn't know what whooping cough was, but it took her seconds to know what it was. [Vanessa] happened to have a spell, and she cough in front of the doctor. We spent the next four or five days on the ICU [intensive care unit]. It was really hard, but [Dr. Cristofani] knew what she was doing, and she make us feel like the whole time she was in control of what was going on with the whooping cough.

What was it like for you to go through five days in the ICU with Vanessa?

Myriam: Just stay with her. Just tried to hold her, make her feel better. And I couldn't breastfeed her. Just stay there watching her.

Alvaro: Yeah, they basically asked us not to breastfeed or give any water.

Myriam: Or anything.

Alvaro: So it was hard.

Myriam: Yeah. We was scared that something happen, not being there with her. It's all we can do is stay there.

Myriam: In the beginning, with the first hospital, I feel so helpless, like nothing we can do, it's too late. But when we went to the second hospital, we meet the Dr. Cristofani, and then we saw we was in right hands. I feel better about, and scared at the same time.

What were your feelings when you're going through this?

Alvaro: When people talk about whooping cough, they normally say, you know, it's just a cough, it's something a little harder than a regular cough or a regular cold or something. This is like throwing a baby inside a swimming pool and seeing the baby die. They stop breathing. They turn blue. And it looks like there's nothing that you can do to make them react. You're powerless in front of the baby. So it is very hard.

Describe what you saw in the ICU. Were there doctors?

Myriam: Yeah, the doctors come in. They help her to breathe. ... And it's so scary. It's very scary, because you don't know. I mean, you have to trust them, and it's nothing you can do, just watch them doing the best they can for your daughter.

Alvaro: They were rushing into the room probably three or four times every night. And every time the monitor will beep, probably 2-3 [o'clock] in the morning, they will rush into room, turn on the lights, and start trying to help the baby. And sometimes the monitors are beeping before the baby'll start to choke or have the spells, because they know that the oxygen level is lower, or something's going on. It's surreal to see all these people working on a little baby like that, and just trying to help her.

Some people think whooping cough is no big deal, just a cough. Are they wrong?

Alvaro: Oh, I think so. I mean, at least for us, whooping cough was a very, very scary illness. It not only took like two weeks before we finally knew that it was whooping cough and got into the ICU, but it lasted at least two more months after we got out of the ICU. She still have the cough, and she will keep on having the spells and everything. She was probably getting better because of the antibiotics, but she had that for a long time. We struggled with that for at least two months. It's very scary. When you think about kids that are a year older or 2 years old, it's different. They have bigger, stronger bodies. They can fight that better. When you're talking about kids that are a month old or 2 months old, it's a complete different situation.

She was too young to receive the vaccine, so she was dependent on herd immunity. ... How did it fail Vanessa in this case?

Alvaro: Vanessa was 40 days old when she was diagnosed with whooping cough. So we were probably a week away from having her vaccine for whooping cough. And we felt terrible, but there's no way to have the kids vaccinated sooner than that. So the only thing that will protect a kid like that will be the herd immunity. And in that case, it [failed]. Somebody in the community didn't vaccinate. Later on, we discovered that the case was that somebody on my son's high school had a case of whooping cough. And apparently somebody from the CDC [Centers for Disease Control and Prevention] called us, and I think they called us probably a month after we were back from the hospital, and told us that they trace it back to my son's high school, and that somebody had whooping cough and that's probably when Vanessa infected with it.

How did that experience change you?

Alvaro: After we came back from the hospital, we were very worried about her. Pretty much the first year, we were extremely worried about her.

Myriam: Especially when she cough for any reason, we just jump on her to see how she was doing and is something wrong. We really pay attention more than anything to the type of cough she have.

Alvaro: ... I remember with Vanessa it was like, she will cough and we both will jump, and stop doing what we're doing, and just go to the baby and see what's going on. It was like she was always on kind of an emergency situation when she was coughing. And that's the way we were for at least the first year. ...

Why did you permit Dr. Cristofani to videotape Vanessa in the ICU?

Alvaro: When we walk into the ICU and she was able to tell us so fast what was going on with our daughter, that made us think: Why our pediatrician didn't know that? Why our pediatrician didn't hear that cough and didn't tell us that sooner? And then the doctor approaches and says, ''Well, I'd like to make a video. I'd like to make a video of Vanessa when she's coughing, if that's okay, because I teach other doctors, and most of the doctors, they never heard kids with whooping cough. So it would be great if they can hear it in a video.'' I talked to my wife, and we both agree that that will be a great idea.

You picked up the camera too, at one point?

Alvaro: I felt like useless inside the room. I mean, there were like five or six nurses and doctors, and she was with the baby, and I was just standing there. And was like, well, better do something to at least stay occupied. So I grab the camera and I film in a couple occasions when she was having the spells. But I knew that the baby was being helped by the other people in the room. ...

Is it hard for you to look back?

Myriam: It is.

Alvaro: Yes. It is hard to remember that situation. Your brain almost block that.

Myriam: And it was like a very sad moment. It's going to be really hard, because she was little and we was scared, and she can pretty much die if you don't take her to the hospital right away. ...

You were in an ICU for five days. What about work and the financial part?

Myriam: At that moment, we had really good insurance. Through his work. So they covered pretty much a lot of stuff.

Alvaro: Oh, it was a big bill, but they took care of it. ...

And days off of work?

Alvaro: Oh yeah. You have to take at least two weeks, pretty much, because after we returned from the hospital, I stayed home and tried to help her with the baby. So at least I have to take two weeks off, completely. ...

What does your blog have?

Alvaro: We speak Spanish, and we started our blog sharing our experiences in Spanish. As parents. And we decided to start talking about what do we feed the kids with, how do we make chicken soup in a way that the kids will like it. And so far it's been only in Spanish, but I think people are liking it, and a lot of people from United States, a big chunk of population that speaks Spanish, are visiting the site. And so we put all plans for vaccinations on the site. ...

Do you talk about Vanessa's whooping cough on the site?

Alvaro: Yes. We have an article actually telling the story about whooping cough and Vanessa.

What kind of feedback do you get about that story?

Alvaro: We have questions about it. We normally have parents that they contact us because their kids are coughing and they visit a doctor and they have the same similar experience where the doctor will say, ''Just take it home. It's normal croup of normal cold.'' And so they are asking us sometimes, and we're not doctors, and we always explain that to them. But we always tell them, you never have to just take one doctor. You can just go visit another doctor, take it to the ER if you think that that's the case. Just better to be sure about it.

Alvaro, describe when she first starting coughing. What is the coughing like?

Alvaro: In the case of Vanessa, she will stop breathing first. And it will take her seconds to start coughing. So you can see her chest stop moving, and then you'll see her trying to breathe. But it's like she's swallowing water instead of air. So sometimes she will take a few seconds and then she will start spitting or just screaming, basically. When she screams, she start breathing again. So it's very hard to see.

Myriam: When she was coughing, her tongue was pulled out. Like really out, and kind of huge. A normal cough doesn't have that.

Alvaro: Yeah. They stick the tongue out, and that's one of the things that Dr. Cristofani told us. That's one of the symptoms of the whooping cough, is the babies will stick their tongue out and cough that way. And the sound, the whooping sound.

The sucking in of air?

Alvaro: Yes. It's almost like ''whoooh!'' You have to see the video to understand. Every time they cough, at the end will be this ''whoooh'' sound to it.

What would you like to say about Dr. Cristofani?

Myriam: Dr. Cristofani's a great doctor. She save Vanessa life's. She help her and she help us too. When at first she's come up with the whooping cough, I didn't know what it was. I say, ''What it was?'' I try to relate it with some Spanish name, and she come up with the dictionary and showed to us what it was she talking about. I think she's a great doctor. She has a lot of experience. Even when she took Vanessa in her arms, she took different way than other doctors do. ...

Alvaro: First, she made us feel like she knew what she was doing the whole time, and she was in control. But she made us feel safe. It was like a safe place. We actually ask her if there was another stage. When [Vanessa] was choking and having these spells, at some point you're like hopeless. You think: If she stop breathing, what are they going to do? How they're going to move forward with that? What the doctors are prepared to do? And the doctor was saying, ''Don't worry. We still have another stage. We'll probably have to intubate her. But she's not going to die. She's going to be okay.'' So just that was great. ...


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posted april 27, 2010

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