A nurse from Center for Families had done a presentation about relaxation techniques during the exstrophy meetings, so we used some of those, like deep breathing and blowing bubbles. But Eric’s a kid you can kind of talk through things. I know some kids are not – my nephew would be just like, “Ahhh!!” Eric’s personality makes it easier to use those types of things.
We just did as much fun activities as we could, you know, to make it fun, and tried to give him a choice whenever he could have one.
Mother of Eric, age 8
Backlashing to the kidneys
Manny’s first operation was to remove something that’s called urethral valves. They call it PUV, and it’s only in boys I believe. It’s a little tissue that somehow when you urinate it doesn’t open all the way and it backlashes to the kidneys. It never drains completely. So that’s what was happening – it was going back into the kidneys.
Mother of Manny, age 10
Bladder exstrophy repair
Peter was induced in December. My OBG Doctor was aware of the whole situation, two pediatric surgeons were present, and many nurses were ready for anything. When Peter was six hours old, he underwent a surgery to close his bladder and to bring together his pelvis. The surgery took eight hours and he stayed in the intensive care unit for ten days. I was able to stay with him at all times and the nurse of course and nurse him of course with the help of his father.
It was very hard to see a newborn go through eight hours of surgery but with our faith, prayers, and support from my family and my husband’s family I was able to endure that period.
Mother of Peter, age 13
Cloacal reconstruction
I couldn’t wait for the surgery. I wanted it over with, definitely. I used to count down: in the paper it would say, “This is the 312th day of the year,” and I knew the date that we were going in – not the date per se, but roughly. So I couldn’t wait for it! I just wanted a step, let’s get it going!
And it was hard when she did have it, because she was still such a baby, and again, all the prep work, and then seeing her after the operation with all the tubes and this and this…again, it was hard but in my mind’s eye, I knew she wouldn’t remember this. It really upset my husband – he just broke down. I said, “Oh, I know it’s hard but she’s not going to remember this.”
Mother of Elizabeth, age 16
Being a nurse versus a mother
Of course it was nerve-wracking to have her go into the room. Me being a nurse, I know unfortunately a lot of complications can happen. And I had to step back from that position of being a nurse versus a mother. So the mother in me thought I need to be with my child – they were having trouble putting IVs in her – but then the nurse in me wanted to take over too! So it was kind of a dual role for me, but I had to know my place.
Mother of Alexa, age 16
First we didn’t know what the problem was, so we only came to know after a couple days, and then we had this appointment after a month or so with the urologist actually, and a neurosurgeon. Then they did a study after three months for urodynamics, and they decided to operate on her as soon as possible. She was six months, so we were both in the hospital, mom and I. That was okay, no problem at all. And even after going home, the recovery was quick. It took time, but no complications.
Father of Jaya, age 8
Fetal surgery
The periontologist I had at the time made a phone call to have the fetal surgeon give me a call that night. So we kind of got on board and we ended up doing the fetal surgery thing. From the diagnosis* to having that done was like, I don’t know, three and a half weeks or something. It was kind of crazy, and it was all a rush, I guess, of getting things done.
But basically she fit the criteria for their subset of patients who were seeing really good outcomes. And we felt that since they were finding that a lot of the damage was done by the constant exposure to the amniotic fluid, we felt that closing it up in utero would prevent further damage. So it made sense for us.
The surgery I don’t really remember. The recovery, the first week was kind of rough, because you’ve had a C-section but you still have the baby inside. It was a little bit tender and hard to get around, but after that it was fine. I was on one of the Terbutaline pumps for premature labor and I did the bed rest thing, but I had good support from family, so that actually went pretty smoothly – my parents actually were in between houses and they had a place to stay but they were over at our place a lot, cooked and helped take care of things.
Mother of Siobhan, age 9
* Editor’s note: Siobhan was diagnosed prenatally with spina bifida
I couldn’t promise her that everything was going to be okay
The morning of the surgery, my 14-year-old called me, hysterically crying on the phone, saying, “Mom, I’m afraid I’m never going to see her again. I’m afraid she’s going to die.” I just said to her, “What are you going to do? This is what it is. If she’s meant to die, she’s meant to die. We have her in the best hospital with the best doctors, and she’s healthy other than her spinal stuff.” Her heart was good, her lungs were good, she seemed healthy otherwise. So I said, “All we can do is put her in the hands of the best people that we know, and trust in God that whatever’s going to happen’s going to happen.” But I knew I couldn’t promise her that everything was going to be okay, because what if it wasn’t? So that was a hard phone call.
Mother of Kayla, age 14
I knew I just needed to be her mom
One of the girls I worked with as a nurse said, “I would never want to take care of your kid. You’re going to be a maniac!” But I was calm! I don’t know what it was, but I just gave it all up. I just knew I just needed to be her mom, and I didn’t need to be a nurse, and I just needed to let them take care of her. And they took such good care of her!
Before she went into the OR, we were in the pre-op waiting area and they’re doing the paperwork and everything, and one of the OR nurses leaned down and she said to me, “You know, these are the best guys in the world, don’t you? How did you get these guys? These are the best guys in the world.” And that made me feel really, really good. And then every physician that walked into the room touched her, every single one of them! They grabbed her hand, they said, “Oh, aren’t you a cutie!” and one of them leaned down to me and said, “I have a little one just this age. We’ll take really good care of her.” So that did wonders for me.
Mother of Kayla, age 14
Mother of Kayla, age 14
There was no way I was leaving that waiting room
My husband was great. I’m a pretty independent person, and when she was in the OR, there was no way I was going to leave that waiting room. There was just no way I was going to leave that waiting room! And he went down and got food for us and made sure I ate and made sure I drank. I was nursing at the time, and he would say to me, “Don’t you think you should go pump now?” So he was really really supportive of that, when he knew that there was no way I was leaving, in case any word came about how she was doing…Then he had a harder time when they had to draw blood and stuff – he just couldn’t watch that. He said it was just too hard, whereas that didn’t bother me as much at all because of being a nurse. So it kind of worked out fine.
Mother of Kayla, age 14
Keep an eye out for changes
He had the surgery when he was three months old, which was very scary. I was still nursing at the time, but luckily we lived in Jamaica Plain, so we were literally ten minutes from the hospital, which I have to say was a blessing. And to have our support system there and family and friends, it was very helpful. And at the time, the neurosurgeon felt that the surgery had gone well and felt that the risk of re-tethering was very low. Now I think, in retrospect, re-tethering is a lot more common than we realized at the time, and as I’ve come to learn in my experience and research. But we were told basically just to keep an eye out for changes: in gait, in strength, in problems during potty training, things like that. I mean, at the time he was a baby, so you wouldn’t have known that there was anything wrong, but we sort of went on our way and said, “Okay, we’ll come back, and just every year we’ll do a check-up,” and things looked great. So we felt really fortunate that things had gone well, but there was always in the back of my mind this knowledge that I had to be vigilant in terms of looking at anything that would be different developmentally with him, or any changes that might arise over time.
Mother of Henry, age 12