An incredible story about one sweet girl’s struggle with Veno-Lymphatic Malformation and how, with the help of her amazing mom, she pushed through it to continue dancing. Photos by Tara Swain.
Briley, like most of you, can’t imagine her life without dance. It’s her passion. She started dance when she was just three years old and did ballet twice a week. She’s even had the same teacher, Danielle McKee, since then.
When Briley was only four months old, she started to exhibit symptoms of a disorder that wouldn’t be diagnosed until she was 10 months old. She suffers from having a Veno-Lymphatic Malformation in her right leg, from her hip to her ankle.
Recently we had the pleasure of getting in touch with Briley and her mother Tara to hear about Veno-Lymphatic Malformation, how Briley has gotten through it and continued to dance, and how Tara, as a parent of a child in so much pain, has been able to get through it with a positive outlook and the support of those around her.
What is Veno-Lymphatic Malformation?
Tara: The disorder is caused from the veins in her leg having not fully formed in utero. The fluid that flows through these particular veins will often become clumped up; forming knots or small “tumors.” The tumors can also appear after any sort of injury to the leg. As a baby, simply holding her leg a little too tight while changing a diaper or getting her dressed would cause one. While any sort of injury as small as a pinch or bump can cause them, they can also appear completely on their own for no apparent reason. The tumors are extremely painful to the touch and make normal activity difficult at times. With the tumors, comes swelling as well, which is also painful. The tumors will go away on their own but can take anywhere from a few weeks to a couple of months and there is nothing that can be down about it in the meantime.
Can you explain the symptoms Briley experienced and the long journey towards a diagnosis?
Tara: Our first sign that something wasn’t right started around the time Briley was 4 months old. We noticed her right leg was always a big larger than her left. I let her pediatrician know but he was not concerned.
By the time she was 6 months old, I was still concerned, It had grown even larger again and she seemed to favor it when she tried to sit up or crawl. By the time of her 8 month check up she had bruising on that leg that would not heal. I became even more concerned. We had some blood work ran as well as an ultrasound of her leg. We were told it was “like” a hematoma, but it wasn’t a Hematoma. They told us they really weren’t sure what it was, but not to be worried.
Just before Briley was 10 months old I took some photos of her in our backyard. My husband was with me and we both noticed after she had been standing for several minutes that her right leg became extremely swollen. Her foot even seemed to be bulging. We had never noticed it being this bad, so I called for an appointment. We went in again, had the same tests run, the same ultrasound and got the same results. They had no idea what it was.
A few days later I received a phone call from her pediatrician letting me know he had made an appointment for us and they were concerned it could be something more.
I remember standing in the exam room while a team of doctor’s examined my 10 month old and I’ll always remember what it felt like as they tried to hide their puzzled looks when they said, “We aren’t really sure what this is… but we are going to start ruling things out right away.” Our number one priority was to rule out a very rare cancer of the muscle.
Eventually they decided an MRI would be best, but she would have to go under sedation. This did not go well and this was when we learned Briley has a very hard time with sedation. She had a traumatic time waking up and was not herself for weeks.
With this disorder being rare and as I was told later, also hard to diagnose, we were blessed that the x-ray technician that happened to be working that day, knew just enough about the disorder to know what it was and what it looked like on a scan.
When our doctor called to tell me the news we were relieved to finally hear that it was 100% not cancer. When she told me that she really did not have any information for me about the disorder, I felt very overwhelmed.
How did you feel once Briley’s disorder was finally diagnosed?
Tara: As a mother who has been struggling to get answers about her baby, the first thing I wanted to do was find every piece of literature I could about this disorder. It was clearly an issue. I wanted to know what to expect, what to look for, and what I could do for her.
The doctor said she would be contacting another hospital as she thought this would be something they could help with. But after I never received a call, I called our doctor to check in and she let me know that they also had no information and could not help us.
As I knew compression helped prevent the knots, I began searching high and low for compression pants, workout pants, and athletic pants. Unfortunately it’s not the easiest to find this sort of thing for children that young/small. I would, however, find things occasionally and when I did, I bought everything they had in her size.
I also reached out to friends and family that had recommendations for anyone who could give me any sort of answers on how to help Briley. I had several people who were quick to try to point me in the right direction, but one person in particular, who happened to be a Pediatric Therapist, quickly pulled some strings and got me in touch with a Lymphedema Specialist who was located a little over an hour from us.
We scheduled a visit with her for her earliest availability. We spent the better part of two hours with her. She examined Briley, showed me techniques using kinesio tape to help with circulation. She showed me very soft massage techniques to help with her circulation as well. She answered questions that had been building up all this time.
I was able to get a little closure on some things, but the visit verified some scary details as well. She let us know that there was always a possibility that Briley could lose her leg one day if we were not able to manage her disorder successfully. She confirmed a huge fear of mine, but being able to speak with someone who knew a little about what my daughter had been going through and how we could help her, was a huge weight off my shoulders as well. I left that hospital with bags full of medical compression sleeves and kinesio tape that she gave us.
I was also always searching online for any information I could find. I ended up finding a Facebook group specifically for parents of children with Lymphatic Malformations. It was in this group that I met a mother who had a little girl, just a little older than Briley, who suffered from the same disorder, in the same leg. We have continued to keep in touch over the years, periodically checking in with one another and updating each other on how the girls are doing, just incase we can help each other out with new tips on helping to manage their pain and swelling.
Now that you knew a bit more about the disorder, what were your next steps to control the pain?
Tara: We continued to manage her pain and her swelling. It was not great, but it was manageable. Briley has a fairly high pain tolerance and doesn’t complain about her pain very often.
Unfortunately when Briley started Kindergarten (in 2015) after only a couple of months her dance teacher noticed that her muscles were becoming extremely tight. I reached out to my friend again who had put us in touch with the specialist to see if she had any new information or pointers to help in this situation. She was quick to let us know that she was now familiar with a new option and she introduced us to the lymphatic pump.
From birth, Briley’s right leg was always slightly larger than her left. As the swelling got worse, it was even more noticeable. But after 2 weeks of using this pump daily, for the first time in her life, her legs were exactly the same size.
She began physical therapy as soon as the swelling was under control. Unfortunately the tendons on the back of her bad leg had retracted. She continued with physical therapy for months, but each time she would hit a growth spurt, it would get worse. Eventually after a very long road, Briley was told she’d have to have surgery. Channeling her love of dance, she was determined. Even after sitting through the visit with the surgeon who let her know that she would lose strength and that normal activities would be “different” and possibly difficult for her for awhile, she looked up at me and told me she was not missing her dance season.
She had surgery to cut the tendons on the backs of both legs, her feet having to be flexed and casted on both legs. She had this done on October 14th. 3 days later, she was walking on her own with the help of fore arm crutches. She went back to school on the 18th.
How did Briley recover from the surgery – both physically and mentally?
Tara: Recovery from surgery was extremely difficult. She had another horrible reaction to the sedation (which had lasting effects for weeks again). She was not herself again. With the combination of the anesthetic, the surgery, her routine being off and her doubting herself… it was hard to watch my girl and see a different kid. I can only say that now because I feel like we have finally, truly gotten over the worst of it.
Her little spirit was diminished and she was not the little girl that I knew anymore. Her confidence was shot. She hid it well and she wouldn’t talk about it. I felt like I was hitting a wall when I tried to get anything out of her. But I saw it in every aspect of her life; everything she loved and enjoyed, the way she talked and carried herself, the way she acted in a group of people. I struggled with being impatient and wanting everything to fall into place and not being able to do that for your child, who you watch on a daily basis in pain, is harder than I can explain.
What does her treatment plan look like now?
Tara: Every night at bedtime, we stretch Briley’s leg and then she wears a Lymphatic Pump on her leg for about an hour. The pump works like a blood pressure cuff, but massages her leg to help with circulation.
She is currently wearing custom AFO’s (braces) on both legs for a couple more months. She began wearing these once the casts came off after surgery. She wears these from the time she wakes up to the time she goes to bed with the exception of dance practice and bathing.
We also have to stretch her leg daily and always keep a close eye on it for any changes. She’s had physical therapy for almost a year and will continue to have to work on stretching and building some strength back in her right leg.
She also wears a compression sleeve on her right calf at all times and will most likely wear this the majority, if not all of her life as it helps keep the swelling down as well and helps with her pain.
We are working with her to teach her how to do a series of stretches herself as well as manually stretching her ourselves. These will help keep her muscles from tightening up and help with her balance. She is a good sport for the majority of it, but trying to train a 7 year old to be disciplined and responsible for some painful, daily stretches, has been a little tricky.
While I would like to hope that we are finally over the big hurdles, I am sure that we will face more trials with this in the future. I know that there can always be complications or new issues arise. But the fact that when I look back at what all she has overcome so far, I am amazed. She is so incredibly strong and brave and I don’t think she really sees it. I do believe jumping back into the competition season helped her confidence immensely.
What was the most difficult part about getting back into dance?
Briley: It was hard for me to go back to dance after everything that happened. Miss Danielle had to re-teach me how to do things again because I didn’t think I could do them anymore.
I was afraid I would fall and I was afraid someone would laugh at me. I did fall but nobody laughed at me, instead everyone was nice, and I got up and tried again.
Tara: I believe the most difficult part for her was the fear. She had experienced so much pain in both legs, especially her right leg, for so long, that the thought of running, jumping, turning and leaping off of those legs, was scary for a little girl.
After Briley’s surgery, she came back to dance and sat during competition team practice. For the first week or so she watched. They were learning some of the new choreography and this way she wouldn’t miss it. Once she had some confidence about being up on her casts in front of her team, she began running through the motions of the choreography, doing what she could while still being in double casts.
I believe the scariest part was the first time she danced out of her casts again. She had lost some strength and muscle and her balance was off more than usual. But after a few weeks I saw a different child. Her self confidence suffered greatly throughout all of this and as I began to see confidence grow in her again, I noticed her dancing getting better and better.
The turning point was a large dress rehearsal we had the week of our first competition of the season. It was the first time she performed her solo, duet and group dance for the season in front of everyone in costume and she did a wonderful job. It boosted her confidence so much that her teachers from school were informing me over the next few days that they saw a “different child” that week and that she had so much self confidence.
What are her goals for the future?
Briley: To be kind and to help kids if they are being bullied. I also want to dance on pointe, become a veterinarian, and a dance teacher so I can “craft” (choreograph) dances like Miss Danielle… Oh and I also want to win Platinum.”
Tara: She is talking about the platinum award for Showstopper. This will be her 3rd year to compete at Showstopper, her 2nd year for a solo, and one of her goals she has talked about since last year was that she wants to place platinum for her solo. It is our favorite competition!
She lost some strength and she still struggles with her balance and her flexibility from her tight muscles, but on a daily basis she is hollering “Look mama!” from across the room to show me she got her leg mount a little higher. The same little girl who told me in that surgeons office months ago that she was not going to miss her dance season and was determined to get through surgery and back to dancing.. did just that. So when that same little girl who dreams of dancing on pointe like the “big girls” one day, tells me that one day she will, I don’t doubt her.
What advice would you give to young dancers on overcoming illnesses & continuing to dance?
Always try your best, but it’s okay to ask for help. It might be scary but your team is counting on you and they will help you.
Tara: My advice is probably more for the parent(s) of the young dancer(s).. and it would would be to try your best to take it in strides. The last couple years of our lives have been so overwhelming… and not knowing from one day to the next, what the future might hold, was hard. I cannot tell you how many times we’ve talked to Briley throughout all of this about “pushing through.”
Just because something is hard, it doesn’t mean it’s impossible… and it’s worth it. The worst effects of her disorder so far has taken place from ages 5 through 7 and trying to explain “pushing through” and persevering through pain to a 5 year old in a way they will fully understand, is not the easiest.
I wanted to make sure that I was not pushing her to do something she no longer wanted to do. But I wanted her to understand that as long as she wanted to dance, she needed to do her best to put forth her strongest effort; not only for her team, but for herself.
A support system is so important. Briley knew she could talk to us or her teacher anytime she was afraid or nervous. We’ve also talked a lot about what it means to be brave.
Being brave doesn’t mean you aren’t afraid. Being brave means being afraid, but doing it anyway.
Seeing her overcome fears after getting back on her feet after surgery, and realizing what she is capable of has been amazing.
As difficult as this year has been, I believe seeing her beaming when she walks off that dance floor or stage, makes it all worth it. I am not the type to open up and ask for help during struggles. But it was only a matter of time before Briley’s struggles became apparent to our dance family, and we were only met with incredible support.