I hope we don’t have any more of those
This is the first one [debulking] we’ve had, and it was rough, he was in a lot of pain from the incision down his leg. I hope we don’t have too many of them, those were not too much fun.
Mother of JT, toddler, CLOVES syndrome
That one was probably the most stressful
Dad: The first surgery, how old was she on the first one?
Mom: She was about almost 2 on the first one, and that was hard.
Dad: The first one hard, but it wasn’t as hard as the second one because [in the first one] the area being treated was on the back side, the side of her foot. It was basically fatty tissue, there was no muscle involved, and it was a stressful, she was a baby. The second one was a little bit trickier because it was an 8-hour surgery. The MRI showed what it showed, but he really didn’t know how the fatty tissue was interwoven with the muscle tissue. And she did go through a couple of blood transfusions during the surgery and we had to give her daily injections of blood thinners for two weeks prior to the surgery here in the house. So that one was probably the most stressful, to be honest with you.
Parents of Erin, child, Klippel-Trenaunay syndrome
The recovery was very quick
Dad: The recovery was very quick. Immediately after the surgery she was swollen and whatnot.
Mom: Heartbreaking to see.
Dad: But, it was definitely a benefit to us because once the surgeon did get into the surgery and we saw him afterwards, he was like, “It wasn’t as bad as the MRI projected it to be.” In other words, he was able to remove a lot more tissue than originally discussed, and when he was done, he came up to the room and we took the dressing off, and me and my wife were amazed at how much that he improved the size of her leg, it was dramatically different. So it was stressful, but I would say it was 110% worth it.
Mom: Her doctors say she’s going to have 6 or 7 more surgeries before she’s 18. And now it just gets harder and harder; she’s older now.
Parents of Erin, child, Klippel-Trenaunay syndrome
Many surgeries in the last few years
Diego has had many surgeries in the last few years. The nature of the disease is that things are constantly changing and we often need to seek medical attention… He had had several operations to remove malformations. There is pain after these procedures, but it goes away within a week or so. We worked with doctors to decide on whether these surgeries should take place or not.
Mother of Diego, teenager, CLOVES syndrome