Sunday, February 6, 2011

Our Story: Infant Son Diagnosed with Primary Lymphedema

By Heather Ferguson

It is sometimes hard for me to believe that not very many years ago I had never even heard of the word lymphedema.  And yet today this disease is a hugely defining factor in my life – partially out of necessity as the caregiver for my son, and partially by choice through my advocacy work to improve insurance coverage for lymphedema treatment.

My son Dylan and his twin brother Devdan were born September 29th, 2006.  Dylan had some minor genital swelling at birth but nothing the doctors or nurses were concerned about.  Over the next two months I continually questioned our pediatrician about the progressing swelling, but it was always dismissed as probably nothing to worry about and something to just keep an eye on.

But by two months of age he had pitting edema in both legs and feet and at our well baby visit our pediatrician’s reaction to Dylan’s swelling was suddenly radically different.  Although we were given no indication of what might be wrong, we were told to go straight to the hospital where Dylan would be admitted for additional testing.

Several hours later a nurse finally divulged that they feared Dylan was suffering from heart failure.  Suddenly I realized why everyone had been so tight lipped.  Although we felt an instant panic and heartbreak, my gut also told me that there was nothing wrong with Dylan’s heart.  Over the next two nights and three days they ran ever test they could think of.  As major organ failure and disease were ruled out we felt relief, but they consistently failed to find any explanation for the swelling.

Finally, having run out of tests to perform they started searching the web.  On our final day, just before discharge, a doctor told us something to the effect of “we found this thing on the internet called lymphedema and maybe it could be that.”  We were offered no explanation of what lymphedema is or how it is treated.  And despite the fact that we do have a doctor who specializes in lymphedema in our city we were not referred to her.  Instead, we were instructed to follow up with a pediatric surgeon who had a month before diagnosed Dylan with bilateral hydroceles. 

Within a few days we were again in that doctor’s office, and he clearly had not done so much as Google the word lymphedema.  This was beyond his scope of expertise and apparently he was not willing to step outside of his comfort zone.  Sadly, his tone conveyed disinterest as he took one quick look at Dylan and told us to just keep watching it and come back in six months. 

At this point I had no confidence we were being given sound medical advice and I started to take matters in to my own hands.  Thanks to the internet I quickly learned that if indeed Dylan had lymphedema the last thing we should be doing was nothing.  I found that we had a local lymphedema specialist and pleaded with the office to not make us wait the months it usually takes to get an appointment there.  

Somehow my sense of urgency reached the doctor who amazingly agreed to see us on New Year’s Day when the office wasn’t even technically open.  Upon examination of Dylan, and discussion of his medical history and test results, she immediately confirmed a diagnosis of primary congenital bilateral lower extremity lymphedema. 

So now we finally knew what Dylan had but we didn’t know why, and the absence of an explanation made the diagnosis that much harder to accept.  Due to an insufficient number of properly trained therapists we would also have to wait a full month after Dylan was officially diagnosed before beginning treatment.  By this point we knew that the sooner treatment is begun the better the results and the less chance of any permanent damage.  And it was heartbreaking to now know the treatment that Dylan needed but have to wait helplessly and see him continue to worsen. 

Although I had a cursory understanding of how his lymphedema would be treated it did nothing to truly prepare me for what it would be like.  The wrapping seemed so crude and archaic.  It seemed hard to believe that this, along with MLD massage was really going to help, and even harder to believe that modern medicine had nothing better to offer my child.  I despised the way the wrapping looked – so massive and bulky on his tiny little body.  A few times I tried to make light of it by joking that he looked like the Michelin Tire Man, but in reality I was choking back tears, usually unsuccessfully, every time I looked at him wrapped. 

And even worse than the daily regime at home I hated all those trips to the clinic to see the therapist.  The facility was clearly not accustomed to serving pediatric patients, or even children, and this only served to heighten my sense of isolation.  Not only did I have the expected feelings of “why my child” but also “why is my child the only one”.  But from day one we were vigilant in adhering to treatment protocols and slowly but consistently Dylan has improved dramatically.  Thankfully, thus far in Dylan’s lifetime he has suffered from only one serious complication; a cellulitis infection which came on with no warning and for no apparent reason, yet resulted in a three week hospital stay earlier this year. 

Now of course, the daily regime is our new normal, but when I think back to how difficult it was in the beginning it still makes me pause.   Fortunately, nothing Dylan needed treatment wise during that first year was ever denied by our insurance company.  But shortly after the kid’s first birthday we were forced to change providers, and the new company staunchly refused to cover Dylan’s compression garments, which he had been wearing since 7 months of age.  After six months of fighting their denials I had exhausted all of my appeals, and even with the help of Bob Weiss I had gotten nowhere with my insurance company.  
But I was not willing to give up and I contacted my State Representative, Tricia Cotham.  Thanks to her intervention the insurance company agreed to have their medical director review the case, and finally, after another three months they guaranteed coverage of Dylan’s treatment for only one year.   I asked how they could make such a decision for a life-long disease with no known cure I was given no answer.   I also asked if they were going to extend this one year of treatment coverage to their other policy holders with the same disease needing the same treatment, and was told no. 

Because of my interaction with Bob and the National Lymphedema Network I understood that this was not an isolated incident.  Lymphedema sufferers all over the country were being routinely denied coverage for care, and this only strengthened my resolve. 

At this point I knew, that if I did not correct the underlying problems I, and later Dylan, would be forever struggling to get the medical treatment that he needs and deserves.  So I made it my motto that while I could not cure Dylan I would do everything in my power to make this disease easier for him to live with – I would fight this battle now so that he would never have to.

I knew from the start that nationwide coverage was my end goal, but heeding the wise advice of Bob Weiss I took on getting a state mandate first.  In hind sight it was a great blessing that Representative Cotham witnessed first-hand that this problem could not be solved on a case by case basis.  I am certain that she is now even more sympathetic to the plight of lymphedema sufferers being denied coverage having experienced the frustration right along with me.  Representative Cotham advised me she felt we had a decent chance of obtaining a North Carolina state mandate, but to anticipate the process could take up to six years.  The fact that we passed ours so quickly is truly a testament to how hard she and I worked. 

We agreed at the outset that we should introduce a bill that had the greatest chance of success while helping the majority of lymphedema sufferers in the way they needed it most.  We were mindful that we likely could not solve every problem in one sweep, and Representative Cotham assured me it would be better to get what we could on the books now and revisit the issue several years later by introducing more legislation if we felt there were serious deficiencies in the mandate which could be improved.  And the result - in only four months time we introduced and passed a lymphedema treatment mandate which went in to effect January 1, 2010!

That made North Carolina the second state in the nation to require private insurance policies to cover lymphedema treatment, with the first being Virginia who has had a similar mandate in effect since 2004.  But the problems surrounding lymphedema treatment coverage cannot be fixed through state mandates alone, which are only applicable to private insurance policies and state plans and do not afford coverage to Medicare recipients.  Nor should we have to spend decades working state by state when this is a nationwide problem that needs and deserves a nationwide fix.
So after obtaining our North Carolina state mandate I forged ahead and began contacting my Congressman’s office.  It took several months of persistent phone calls and emails before they granted me an in-person meeting with Congressman Kissell himself, but within weeks of meeting with me I got a phone call that he had decided to sponsor what is now The Lymphedema Treatment Act.  That bill was introduced in late February of 2010 and I have been working tirelessly since that time to build support and momentum for this legislation. 

But we need your help to succeed. To learn more about the bill and how you can support its passage visit Please feel free to contact me at any time if you have questions or would like more information.  Together we can ensure that my child, and the millions of Americans who suffer from lymphedema are no longer denied the treatment coverage they need and deserve!   

Heather Ferguson