Blink of an Eye

When Juniper was three weeks old, we noticed that her foot was a little swollen one afternoon when we were hanging out with friends on our deck. She still had some major chicken legs going on at the time, so her puffy little foot seemed incredibly puffy in comparison to the other, chicken-like foot.  We took Juniper to the doctor a few days later, and the pediatrician said that it was probably an ant bite. We all breathed a sigh of relief and went about our lives, which for Juniper meant that she kept eating, pooping, sleeping and cooing in steady rotation, and for us meant that we kept trying to respond to the needs of this little human as best we could while trying to catch her pees and poops in the potty a la elimination communication, and battling the worst diaper rash ever.

A week later, the swelling had gotten worse and we went back to the doctor. This time, the doctor called the local children's hospital, and after some consultation told us that he thought it was something called lymphedema, but that he wanted to have an MRI and an ultrasound done to be sure. Daniel and I went home and looked lymphedema up on the Internet, despite knowing that this would probably completely freak us out, which it did and I do not advise to anyone who may be in our situation, and found that while there is a lot of information about lymphedema in adult cancer survivors, there is little about primary lymphedema which affects children, and even less about it in babies as young as Juniper. What we did learn was that it is a permanent condition and could look really horrifying if left untreated. We were totally freaked out. I tried to find anything else it could possibly be other than lymphedema. She had a bad diaper rash, could it be infected, and that's what was causing the swelling? Was it a reaction to the vitamin K shot at birth (I did find that this does happen and had myself fully convinced that this is what was going on with J for about two hours until I moved on to something else)? An infected lymph node? I wanted so badly for it to be something we could fix. My mind raced with all the things I wondered if she would never do, and with all the things I feared we'd never be able to do as a family.

Everything looked normal at the ultrasound and again at the MRI. I held out hope that maybe it was something else, maybe it would just go away and my perfect baby would be perfect again. We met with our occupational therapist when Juniper was 5 1/2 weeks old for an eval. She thought it looked like textbook lymphedema. I tried not to cry. As we talked with her she told us that she had spoken with her mentor about what to tell parents of a baby with lymphedema. Her mentor told her to tell us: "treat her like a normal kid." Then I did cry. Our OT gave us so much good information and made us realize that while the lymphedema is something we need to manage, we don't need to let it define our lives.

Basically, lymphedema happens when the lymph system is damaged. In adults this is usually due to either radiation therapy or to the removal of lymph nodes as part of the cancer treatment process. In kids and babies it is due to the lymph system not developing properly in utero. The lymph system could be underdeveloped, the nodes could be too small or missing, the vessels could be too narrow, or a combination of all these factors could be at play. As a result, lymphatic fluid builds up under the skin. If this fluid is allowed to stay there, serious complications can occur like infection and severe distortion of the affected area. The treatment involves massage of the area to mimic the natural action of the lymph system and use of compression garments to keep the fluid from building up again. We have to be extra careful with Juniper's skin because that extra fluid makes the area much more susceptible to infection. Thankfully, lymphedema is not painful and, as long as its kept under control, doesn't limit mobility. For six weeks we will see our OT three times a week, and when Juniper is about six months old we will start wrapping her leg at night, and when she is about a year old, she will be fit for compression garments to wear during the day.

Sometimes I am still really angry that this happened to my baby. In some ways, I feel robbed of having a normal "fourth trimester" to spend with her, I mean I am supposed to be carrying my angelic baby around in a sling 24/7 whilst picking flowers with my hair flowing in the breeze. I wonder what I did to make this happen to her. Other days, I feel thankful that this is all that is wrong and know that it could be far worse. My baby is growing, she is super-strong, and I love her more than the world. I try not to let the diagnosis cloud my interactions with her, because all I want her to see in my eyes is how much I love her and how special she is to me, not how sad I am that there is something wrong. Kind of hard to do when I am sad, but I figure it's good practice for when she's older and I want to laugh when she does something bad but instead I need to reprimand her.  Learning to hide my emotions from my daughter at an early age, I'm a precocious parent.  Seriously though, some days it feels like the end of the world, and others it kind of feels like no big deal, and we want her to feel like it's no big deal even though right now it feels like all of our plans and hopes got turned all around.   


  1. HUGs. I did not know you three were going through this. Thank you for sharing. I'm really glad you're documenting this journey; your blog will be a great, necessary resource for parents, caregivers, friends and family. Thank you, Margaret and big hug and love to you, Daniel and sweet Juniper.

  2. MG, this is really the first public announcement we've made about it. The whole saying it out loud makes it real thing.

  3. You're a strong amazing woman with a great husband and a beautiful baby. You're blessed. I really hope that you can find other moms who also have the same situation so you are not alone. Hang in there, Juniper and Margaret! All my love is coming your way, mama.

  4. My dearest Margaret - you are a courageous, beautiful, and wise mama. Juniper is a very lucky little girl.