Misdiagnosis and Vascular Anomalies
Looking for information on Vascular Anomalies
Combined Vascular Malformations
They didn’t know and they were scared
I was shocked, and just didn’t know, couldn’t really figure out exactly what was going on because they rushed him out like something terrible was wrong. It was just scary not knowing what was going on! They wouldn’t let me hold him, and it had been two days, they had sent him to a different hospital and they spent about five days there trying to figure what was wrong. They didn’t know and they were scared, saying they didn’t know if it was just in his tissues, or if it was into his muscles, or into his bones, and so we were just very scared, not knowing what exactly what was wrong, and what was going to be ahead for him and us.
Mother of Cooper, child, Klippel-Trenaunay syndrome
Part of CLOVES is that it’s progressive
We were initially told that it wasn’t going to be a big deal, and after she was born—actually, after her first surgery, we kind of figured out that it was a bigger thing. Part of CLOVES is that it’s progressive, and so she was born with this huge mass under her arm that was removed when she was three months old, but then after that, all this other kind of wacky stuff with her body started happening. She had this huge growth on her belly, and then a year or two later, lots of spinal stuff started happening.
Mother of Riley, child, CLOVES syndrome
She couldn’t wear shoes
When she started walking, I mean before she had the debulking surgery when she was 3, she couldn’t wear shoes. I mean, the shoes that they had to make for her were like, these huge Eskimo-looking shoes. She would not have been able to wear pants; that would have been a very big issue. That and the bleeding… People would stare at her, and then the pain, she had a lot of pain.
Mother of Caitlin, pre-teen, Klippel-Trenaunay syndrome
Vascular Malformations
From being elated to what do we do now?
They put her away. They took her just to make sure, because she wasn’t really yet breathing right away. It was a scheduled C-section and they turned around and put her in a neonatal under an oxygen tent. They were making sure there were no other difficulties with her eyes until some other specialists could come by just to see if there was anything else beyond that…You went from being elated to, “what do we do now?” The process starts, trying to figure out what doctors were going to say because we had no clue what it was, we were more concerned about what this was and what effects everything was. My wife was ultimately on the internet trying to find out what it was because some of the doctors here didn’t know—I mean, they said hemangioma, so we went from kind of feeling elated to, okay now what do we do?
Father of Charlotte, toddler, Lymphatic malformation and high-flow vascular lesion
“Oh my god, he’s so cute”
I remember the first thing that I thought when I saw him after I recovered in the pediatric recovery rooms and then they brought me up to the NICU. I remember looking at him, and I remember saying like “Oh my god, he’s so cute.” Because the vision, it sounds bad, but what you start to develop in your mind is this mix of every bad picture that you ever saw, because that’s what you need to do to prepare yourself. So once I saw him, it was just like “Oh my god, he’s amazing, like this is amazing.” It was a really positive experience when I finally saw him I think, because I was dealing with the known, and they were able to tell me then that they weren’t sure if they were going to have to trach him, but that he had a breathing tube. They were able to explain a lot more in concrete terms, so that was a lot easier to deal with for me.
Mother of Matt, child, Lymphatic malformation
It is completely amazing what they have done with her
They have done a fantastic job, when you see the before and after pictures, it is completely amazing what they have done with her. When she was born, she was 7 pounds and 5 ounces, and they estimated her to be almost 5 pounds, and the rest of her was mass. The mass looked like a heart, your heart beating on the outside of her chest, that was how big it was, and it hung past her diaper. It kind of looked like her arm was dislocated, it was pretty shocking to see. And then she had one up at her neck that was kind of squishing her ear, so they kind of thought she was deaf too, and squishing her neck. That’s why they had a team of people, because they thought that they were going to have to keep her linked with me to keep her breathing. They didn’t think she was going to be able to breathe on her own but she could breathe on her own. Anyhow, she could breathe 6 weeks early, but she couldn’t eat on her own. She had to have a NG-Tube for about 6 months. I mean she couldn’t eat, she tried, she did take a bottle, but it was not enough to keep her existing, it would just be like a half an ounce because she would just exhaust herself, so that’s why I had to feed her with the NG-Tube.
Mother of Annabelle, child, Lymphatic malformation
Ok, this can be handled
My reaction was, “ok this can be handled.” For the first 13 months of his life he had no problems with it and then at 13 months he started to get infections. For some we were in the hospital for two weeks, and they would send us home, and we were home for about 10 days and then we would end up back in with another infection and it kept going on for a few months, from February to May. Then they did the first surgery on his abdomen because they couldn’t figure out what the infection was, so they removed it from his abdomen and then did one buttocks and the other, and then they were finally able to get that area out of infection and take it from there.
Mother of Jake, teenager, Lymphatic malformation
Vascular Tumors
It was pretty traumatic
It was pretty traumatic. When she was 6 weeks I took her to the emergency room because I didn’t think she was breathing right and they sent me home. I think they thought that I was a crazy new mom or something. Then in the afternoon, I let the nurse practitioner over the phone hear it, I’m like “Look, I really don’t think it’s right.” And she said, bring her right in, and I did and the doctor listened to it and immediately said she should go to the emergency room. Because of protocol, we had to go to the same hospital again, which is where they sent me home, saw the same nurse that sent me home [laughs], who felt terrible of course, and then they ambulanced us elsewhere. She had a bronchoscopy/larynoscopy at that time, and they said that [her airway] was 95% blocked, so she’s very lucky that we figured it out, and then we spent a week at the hospital having intense steroid treatments and they were wonderful. It was pretty scary, but they really really were wonderful.
Mother of Anne, child, Infantile hemangioma, PHACES association
Worried about the superficial or cosmetic issues
At that time, we were worried about the physical repercussions of either the hemangioma or the AVM, what could happen in your worst case scenario. We were also worried about the superficial or the cosmetic issues of it. With the hemangioma involuting, it leaves fat tissue so her right butt cheek at birth was around double the size of her left butt check. It’s gotten progressively smaller to the point where, at this date you can almost not tell the difference, but at the time, they thought that it might not go away, that she might have to, at some point have an operation so there wasn’t an obvious difference in size.
Mother of Melissa, child, Reticular hemangioma