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 Do what you got to do. After you are told your kid may not live, things like that, you know, okay – that seems like a minor thing. The woman who came in and taught me how to do it was quite, quite, quite good. The best thing she did was give me the confidence that I could do it.

 

Mother of Amalia, age 9

 

 

The technique itself
For me it wasn’t so much upsetting that he had to do it, because he needed to empty out his bladder and he couldn’t. I saw it as, well, he has to be cathed, because that’s going to protect his kidneys that are already damaged. So it wasn’t looking at it from that perspective as a problem. For me it was more the technique itself. I’m not a nurse, I don’t like cuts, so just for me, it was more like, “Okay, I have to do this to my kid! Am I hurting him?” It was more that squeamish piece. But I knew why we needed to do it, and that wasn’t a problem. It was just more squeamishness, especially early on.

To get comfortable, I used to prep everything, then I would watch my husband cath him. I watched a couple times, and then I would be like, “Okay, let me try to put it in.” And I would try to put it in, and then I would be like, “Oh, I can’t do that!” Then I would pull away and he would finish it. Then the next time I would try again. So I took the little steps, little by little, until I felt comfortable.

Mother of Isaiah, age 17

 

Lesser of two evils
That was one of the things I really didn’t want him to have to do was cath, when we heard about it when he was a baby. If you look online in the studies, most kids with exstrophy end up cathing, and I didn’t want him to do that…it just seemed like more of a disability. And it is a pain to make sure you have your supplies – it’s not like, you know, you have to go to the bathroom, you can just find the closest bathroom. But then when they get older and the situation is either that or be wet, it’s kind of like the lesser of the two evils.

Mother of Eric, age 8

 

How is this ever going to happen?
Mom: That’s when he introduced the idea of cathing, and it was really hard for me. I was so shocked. Especially with her aversions and with her other issues, I was like, “How is this ever going to happen?”

Meghan: Why would you ever say that? It’s perfect!

Mom: But I also knew for a fact that she was a kid that once she put her mind to it,
that’s it! And it just gets done.

Mother of Meghan, age 8

 

 When we were at our local hospital, they told her she had had residuals for awhile and she would need to cath. And I resisted it pretty much, you know? It’s difficult. So I said, “I’ll wait until I come to Children’s.” We came here, and then they said it’s a thing she needed to do, so we decided at that time to do it. But at that time we knew much more – they did the cystoscopy, the urodynamics, much more than just an ultrasound, as they were doing there.

 

Mother of Naomi, age 10

 

That’s when it kind of hit me
I thought she was taking it pretty good in stride until we got out of the hospital, we got into the parking lot, in the car, and she just started crying. And that’s when it kind of hit me, like, oh boy, it really is affecting her! Me as a nurse, you know, we’re task-oriented – “Come on, Alexa, let’s just do it!” – not thinking that she has feelings, so to speak, and this is a big thing for her.

Mother of Alexa, age 16

 

We thought she had dodged that bullet
A week or so after she was born, she got a blue leg. They did an ultrasound and found out that her bladder was so large it was compressing the blood vessels going to the leg. We said, “Well obviously, she’s not peeing on her own,” which we had thought she was – because she was actually peeing, but it turned out to be just leakage when she would get so full that there was no other option. But she wasn’t actively and appropriately urinating, so we started doing the cathing.

For a week or two we thought we had dodged a bullet, and then discovered no, not really. We’d sort of gotten hyped up on the idea that she dodged that bullet, and I think we were disappointed that she hadn’t. But after that it sort of turned into one of those things – it’s just, that’s what we do.

Mother of Siobhan, age 9

 

Biting the bullet
They recommended catheterization in the spring of 2009. We were very nervous about it and felt like it was a huge step. We worried about other kids finding out and Ryan being teased, especially since he would have to do it at school a couple times a day (he was in private school at the time). However, we knew that it needed to be done based on what the doctors were telling us, so in the end, we bit the bullet and decided to give it a try. We tried not to show our anxiety to Ryan and just talked to him about it in a matter-of-fact manner. He picked up on our cues and did not seem overly worried about it – except about whether it would hurt a lot. Once we had the teaching session, he felt good about it. I worked out a system with his teacher and the school secretary and things went smoothly at school. The other kids never knew!

Ryan did great! He was doing it completely independently after about a week. We had a great teacher locally who has a daughter who also has to do catheterization, so she could really relate to us. That helped immensely. He didn’t enjoy it – but mostly because it was just one more thing that he had to do when he would rather be out playing.

Mother of Ryan, age 11

 

 When Ryan started using catheters he was nine. He had to use them all summer and at summer camp. At first I think that I looked at him and said, “You are going to do the what?!?!” Eventually I got used to the idea even though it totally disturbed me. I tried to stay away from them, I had my own bathroom away from where he had his and I got used to it.

Brother of Ryan, age 11

 

 You just have to do it
We were seeing the urologist all along, and he was doing serial tests. They basically said that she was getting so many bladder infections and she wasn’t trained, that we should start cathing. So when she was five, we started cathing her. They said, “I want you to take her to the doctors, have her pee and empty the bladder as much as possible, and then have them cath her to see how much residual she had.” And she had like 180 cc’s residual, so they said, “She needs intermittent catheterization.” And that’s when we started with that.

I had a kind of a hard time about that because I was thinking, you know, ten years down the road…now she’s five, but what’s she going to do when she wants to date and get married? I just felt like this was going to be an issue. And I’m a nurse and I felt like it was kind of overwhelming, so I can imagine what regular parents feel! But you know what, you don’t have a choice. You just have to suck it up and do it. I have this attitude, that yes, it’s kind of difficult to think that she’s going to have to do this, but she’s not going to die from it and it’s not going to shorten her lifespan, so you know, suck it up.

Mother of Kayla, age 14

 

It wasn’t pretty
He caths himself now but he didn’t have to at first – it was urinating every two hours. We got up with him every two hours to wake him up to urinate. We were exhausted, it was like having an infant! He started self-cathing so he could leave the cath in overnight and drain into a bag so we don’t have to get up with him anymore. Because his creatinine was going up and down and it was harder and harder to get him up, that’s when the doctor suggested doing the self-cathing. But Dylan strongly resisted the self-cathing – it was not pretty…He was very reluctant. We got a videotape to watch with kids. I think one of the things that made him so reluctant was it was hard for him to see the person in the video was in a wheelchair, and he is not disabled. I think he had a hard time relating to it…When they showed the actual catheterization I remember he threw a blanket over his head and said, “I can’t believe I’m watching this!” He acted like we were showing him something bad. He was horrified and he was adamant that he wasn’t going to do it. But we brought him in and the urologist helped him do it and he did do it after that. He did learn and he did do it. He just did not do it as often as he was supposed to be doing it because it was hard for him to grasp.

Mother of Dylan, age 16