We have to do something sooner than we’re planning
The doctor has given us his thoughts, and what he thinks we need to do and how long we need to wait in between surgeries. I think we’ve kind of gotten to a point now where we’re going to wait a little while before we do anything else, and maybe when Cooper recognizes that there’s something a little bit different, and he might want to have something done. You know, he might ask us to do something, and so we’re going to try to wait until he wants something else done, if he does, but we’ve had some issues with cellulitis. So it hit me that we have to do something sooner than we’re planning, just because of the cellulitis issue, if we keep having flair ups.
Mother of Cooper, child, Klippel-Trenaunay syndrome
We wanted to do as much as we could as soon as we could
The surgeon knew that we were anxious to do as much as we possibly could, so he just tries to set procedures up far enough apart that he feels that Cooper’s had plenty of time to heal from the last surgery, but quickly enough that we feel like we’re accomplishing something, getting him as normal as possible… It’s stressful of course, but we just want him to be as comfortable as possible, and it seemed like having these things done at an early age so that he doesn’t remember being in the hospital and all that, we just felt like doing it earlier was better for him, just because the older he gets, the harder it gets. Now he knows when we’re going to the hospital, and he gets upset, so it just makes it that much harder as he gets older to do stuff. Like I said, we just wanted to do as much as we could as soon as we could.
Mother of Cooper, child, Klippel-Trenaunay syndrome
We really felt something had to be done
We did a lot of talking with the doctor about what was possible and what the results were. We looked at her, and not being able to wear shoes or constantly being worried about, no matter where you were, that you were going to start bleeding. We were really worried about her quality of life in the future, as well as now so we want to do anything we could to minimize those situations. She went through several debulking surgeries; they worked their way up her leg to her buttocks as they debulked and took mass off that leg. The surgeon did a great job of explaining what things could happen as well as explaining why he thought it was a good idea, or the complications that could happen, and we really felt something had to be done, and there weren’t a lot of options out there. We thought the younger she did it, the better it would be too.
Father of Natalie, child, Klippel-Trenaunay syndrome
We had a little bit more time to investigate
She had the cellulitis infection. They treated her with some antibiotics, they got rid of it, and then the head of pediatric surgery at our local hospital was like, “Oh, I can cut the size of her leg down drastically by doing some debulking surgeries.” Once we asked how many surgeries he performed like this on this particular case, he had no history of doing that type of surgery at all. Her being only a month old, we didn’t feel that it was something that had to be taken care of right away without doing some research… Since she wasn’t walking at that time, she was so young that we had a little bit more time to investigate before we made our final decision.
Father of Erin, child, Klippel-Trenaunay syndrome
We’re just custom-designed
The stuff like the lipoma removal and the lymphatic malformation removal, it felt like there was much more choice for us, but it really felt like if we didn’t make the choice to have surgery on the spinal stuff that she would be dead or severely, severely injured which is scary. I know that before her first surgery, we had a lot of kind of concerns about whether or not we were making the right decision for her, you know, “This is the way she was born, should we leave her like this? What does that mean if we leave her like this? What does it mean if we take the lump off? How’s that going to impact her later on?” As a nine year-old now, that’s all stuff that we’re dealing with now. She and her little friend who’s nine in California who has CLOVES, they’re helping us work on our kid brochure, and one of the things that they’re working on is a motto, and Riley came to breakfast this morning and she said, “I think I have a new motto.” I said, “Okay, what is it?” She said, “I think it should be, ‘We’re not messed up. We’re just custom-designed.’” [laughs]
So, initially, we had a lot of “Should we be doing this?” I think now, looking back, it was a really good decision because it seems like some kids with CLOVES who don’t have surgery early on some of their bigger bumps have more issues down the road, so quality of life. But in the moment, in making that decision or those decisions, it was really, really hard. But the spinal stuff was easier because there was so much risk if we didn’t do it.
Mother of Riley, child, CLOVES syndrome
We come enough as it is
The de-bulking procedure, she doesn’t remember it but that was a major surgery. It took a while for her to recover, like 6 months or so. That was the left leg, we never had anything done to the right leg. She gets a lot of infections in the right leg because there’s abnormal lymphatics and stuff, and they said that they could, but she would have to miss so much school to recover from it, because the one she had when she was 3 just took forever to seem to recover. She wants to do it, but we just haven’t done it, and it’s not because of the cosmetic part of it. There’s some pants she can’t wear over that leg, and then it causes her heaviness and causes her pain, and she gets more infections in that leg, but we just haven’t ever decided to do that. It would have to be in the summer, and it would take up the whole summer, and I didn’t really want to consume her life with all these medical [procedures]. A lot of people do the laser all the time to try to get rid of the port wine stain. She has the places, the little blebs that bleed, and the cysts on the inside, and the places that cause her pain in her toes. I’m mean, I’m not concerned with what it looks like, as far as doing that, consuming her life with procedure after procedure. I mean, we come enough as it is.
Mother of Caitlin, pre-teen, Klippel-Trenaunay syndrome
A mix of relief and excitement
You’re in that mode when you have a young child with something, it’s like what can we do to help this as soon as possible? I would have done sclerotherapy at 1 week old, if they had said that that would be ok, because as a parent you just want to start to make things better or do something to improve it. It was really weird because a lot of the people around me would feel scared, like “Oh my god you must be so nervous.” And I would actually feel a little bit of excitement coming in; it’s kind of a weird feeling because it’s not like the excitement to go away on vacation, but like a mix of relief and excitement that you’re actively doing something… I guess nervousness was part of the emotions, but then it was also just this feeling of I just want to feel like I’m doing something. Because when you’re living with this type of a thing every day, it’s like you just want to be treating it, so it was exciting to actually start the treatments in some way.
Mother of Matt, child, Lymphatic malformation
Probably the hardest part
I would just say every time that we hear we have to go to another surgery, it’s scary. That itself I think is probably the hardest part: if the doctors tell us “Well, we need another procedure,” or when he starts having pain, knowing that we’re heading down that road towards surgery again in the near future and just what’s going to come, how is everything going to turn out? Is this going to help him? At what point do you say, “Okay, I think that he’s going through enough pain that warrants having a surgery,” because this is what we went through recently; he was having pain sort of regularly. It didn’t seem like it was severe, but we’re not in his head; we don’t know exactly what he’s experiencing, and we don’t know if he’s not telling us how much it does really hurt because maybe he’s fearful of having to need surgery, so it’s a fine line trying to make that decision: do we do the surgery now? Do we wait a couple more months? If we wait, then it could potentially get worse, and we don’t want him to go through any worse pain than he’s going through now either. So I would say that’s probably the most difficult part, knowing surgery is coming and then deciding when to actually proceed with it.
Mother of Liam, child, Glomuvenous malformation
As much of a normal life as possible
We tried sclerotherapy… We saw some surgeons that wanted to resect the malformation. They told us that she would have a lot of nerve damage and wouldn’t be able to close her mouth, and aesthetically that wasn’t our goal. Our goal was to get the trach out and have as much of a normal life as possible, not necessarily to change her appearance and risk everything else. To me, quality of life is being able to eat and to speak and a lot of that. The road that they were sending us down, she probably wouldn’t be at the point she is now. So here they gave us hope and they said to kind of just fly under the radar as much as possible, wait for treatments to come out and let her grow and get healthier.
Mother of Ashley, teenager, Lymphatic malformation
We’re going to leave the decision up to her
At this point it’s just kind of monitoring it. The next step, if we wanted to just [make] the lesion on the face look a little bit less, we could do laser treatments but we’ve kind of decided that she’s been through enough. She went through the stuff that she had to go through to make her safe and now we’re just going to leave that decision up to her as she gets older, if she wants to do that because that is an option that she can make. It’s not something that is medically necessary so we don’t want to force it on her.
Mother of Grace, child, Sinus pericranii
Different opinions on treatment
There were different opinions on treatment. It was hard to make decisions, because one doctor thought maybe doing laser and getting rid of the hemangiomas would be the way to go, but the chances were that you could do something to the larynx or the voice box and that would be long term. We were advised by other doctors to just use the steroids, that there weren’t any long term effects from the steroids in children because it was such a small dosage. That was really what they would recommend for us to do, so we decided to do that. The steroids weren’t pleasant; she was unpleasant on them, and pretty miserable and her face swelled up. So her whole head was huge and that sort of delayed her motor skills because she couldn’t really move like a normal baby because her head was so big. So she had some interventions at the beginning, but I mean, she’s fine now and she’s excelling in all things, so there’s no problems.
Mother of Anne, child, Infantile hemangioma, PHACES association
He wasn’t to the point where he felt self-conscious
My concern was I wanted to go ahead and have it done at the time that we did because images and things like that did not faze him, things didn’t embarrass him. He was good with it, he wasn’t to the point to where he felt self-conscious. I said, “I don’t want to wait until he is 9, 10, 11, 12, and then have the surgery and have the balloons where he’s thinking of girls and liking girls then and have it be a huge embarrassment,” you know? And so that was another reason I was willing to go ahead and get it done, and when we talked to him, he was ready to have it done. I’m thankful now that we did go ahead and get it done because he just turned 9 and I think it would be much harder now or even later, you know, then it was at 6 or 7.
Mother of Derek, child, Kaposiform hemangioendothelioma
There was some hesitation
Yeah [there was some hesitation about amputation], but Joe’s doctors told us he probably wasn’t going to make it, even if we did continue with his treatments and amputation. We had a choice, we could proceed and keep trying or we could make him comfortable until he passed away. Prior to that, everything in my body told me that we were doing the right thing, but he was being tortured in the process. My head said the right thing to do was to make him comfortable, but when it came down to it, I could envision him as a toddler and you could see in his eyes that he wanted to fight. We had to proceed. And he really communicated… If you interviewed any of the nurses or the doctors on that floor, or the fellows at that time, even though he was an infant, he had a lot of personality in his face. He was the fighter! He gave us strength. He was okay. It was okay.
Mother of Joe, pre-teen, Reticular hemangioma
When you have no choices, you just kind of keep going with it
It was very surreal. I think the first amputation* was a little bit… when they did the first amputation they said he was going to be better after it was done, and you’re like, “Okay. Wait it out.” He’s going to be on a prosthetic and be young and he’ll be okay with that. One of my biggest concerns was the fact that Joe was on a lot of narcotics and I did not want to fry his brain—he was on so many different narcotics to control the pain and also keep his heart failure at bay. We were told by our doctors and nurses that we were certainly pushing the envelope with it with his pain medications. He was on a V.A.C. system for a long time, and we had a diverting colostomy. The diverting colostomy was another one of the most difficult things for me as a parent to do, but we didn’t have any choices, so we did that. When you have no choices, you just kind of keep going with it, you just want to know as much as you can so that you feel like you’re understanding what’s happening and that the best things are happening for your child’s full life.
Mother of Joe, pre-teen, Reticular hemangioma
* This patient had one leg amputated, requiring multiple procedures.