In the past few months, the NLN has received an increasing number of calls inquiring about the risk factors of pregnancy for a woman with primary lymphedema. For the many women and couples who called, and those who may be considering having a child, we have addressed a number of these questions below. Ed.*
Q: What is the percentage of children born with or who develop lymphedema when the mother has primary lymphedema?
A: Due to the inattention given lymphedema in the U.S., we do not have any concrete data identifying the number of people born with primary lymphedema. Here at the NLN, the number of calls we receive from young parents, concerned that their child will inherit the condition, is increasing.
We do see, and talk to, a growing number of people who have multiple generations in their family affected by primary lymphedema, and some who have none at all. However, a number of my patients with primary lymphedema from both backgrounds have had very healthy, lymphedema-free babies who, so far, have not developed the condition. So, at this point, it's very difficult to say what the odds are.
Marlys and Charles Witte, M.D.'s at the University of Arizona (Tel: 520-626-6118), are actively working with a number of families, trying to identify some genetic link and/or other correlations. Possible genetic links are also being studied in the Department of Human Genetics at the University of Pittsburgh, PA. For more info about the study, contact Kara Levinson, MS, at: 412-624-4657. Or visit their website at: http://www.pitt.edu/~genetics/lymph/lymph.htm. This research data will greatly enhance our ability to forecast a child's susceptibility.
If you do have a child with lymphedema: there is a new organization called "PLAN" (Primary Lymphedema Action Network), which focuses on families with young infants born with primary lymphedema. For more information, call Wendy Chaite: 516-625-9862.
Q: Are there concerns of permanent deterioration or worsening of a mother's condition if she has primary lymphedema and becomes pregnant (such as spreading to the other leg, additional risk of infection, etc.)?
A: It really depends on the overall condition of the mom. If she is healthy without any other medical problems, there should not be a problem. But it is very important that couples prepare themselves and realize the tremendous re-sponsibility. You'll need to increase your daily care, such as manual lymphatic drainage twice a day, wearing well fitted maternity panty hose (45-55 mm/hg) or, as some women do, wear an additional stocking to add compression. Avoid sodium and drink lots of fluids (water, tea, natural juices, etc). In regard to spreading to another limb - and if you are concerned, I would suggest doing a Lymphoscintigraphy (contact the Witte's; see answer to question above) - a very sophisticated diagnostic tool used to visualize the lymphatics - prior to your pregnancy. Also, if you have a history of recurrent onset of lymphangitis in your leg, you will be at greater risk of recurrent infection during pregnancy as a result of increased weight/swelling and protein in the tissue. If severe enough, an infection could cause a miscarriage, so you will want to watch closely for signs and symptoms.
The best advice: use common sense and practice meticulous self-care. If you are well, there is no reason that you cannot have a healthy, happy baby.
Q: What are the possible complications from a C-section vs. vaginal delivery and its relation to lymphedema?
A: Both procedures have their concerns. Any time an invasive procedure is performed on a patient with lymphedema, you want to be careful. Especially the woman who has swelling in the pelvic area and lower abdomen needs to make sure to take antibiotics just before, during and after the C-section. Vaginal delivery always has risk factors as well, especially for a woman who is in labor for many hours: usually there is more swelling in the pelvic region and leg(s) from pushing. But once the baby is born, swelling usually subsides in a matter of days.
Q: Is it safe to undergo Manual Lymphatic Drainage during pregnancy?
A: Not only is it safe, but it's extremely important to continue therapy. Your goal is to keep the leg(s) in its optimum condition. Do not forget to use lotion to keep the skin soft and supple. See a podiatrist educated in lymphedema just to make sure that you do not have any possible risk factors such as fungi, Athletes foot, callouses, etc., which could lead into infection. VERY IMPORTANT: Be sure to wear well-fitted high compression maternity stockings.
Additional tips for pregnancy: Educate your GYN and other involved doctors about lymphedema. Get plenty of rest, avoid stress when you can, follow the 18 STEPS TO PREVENTION, and if possible, shoot for winter time for your last trimester, when it's cool. Happy Pregnancy!
And on a different note...
Q: I recently tried to clear weeds from my garden and a few days later noted itching and pain in my arm. Blisters appeared and I realized I had poison oak. Shortly after, I noticed them on my thigh and stomach, likely from resting my arm on these areas. I am very concerned that it could spread to my lymphedemic arm, and since my immune system is still compromised from chemo, that I could become very ill. What should I do?
A: It is extremely important to keep your hands as clean as you can, and avoid touching the area affected. While wearing surgical gloves, wash these areas with water and soap first and dry well. Definitely call your doctor and request antibiotics as a prophylaxis ASAP. Make sure that you do not have an allergy to the antibiotic since this could worsen the symptoms. You might try an antihistamine for the itching, and absolutely avoid scratching as much as possible. Keep the affected areas exposed to air and avoid wearing garments or tight clothing. Also, stay out of the direct sun until it clears up. Poison Oak can be nasty and for patients with lymphedema there is an even greater concern due to the possibility of lymphangitis (infection). Following some or all of the above guidelines will help improve your odds of staying infection-free.
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