Dr. Greene’s Answer:
Being a parent means loving deeply and letting go. Sometimes adoptive parents feel a little bit like they are not true parents. As I read your letter I became certain that you are a true mother in every sense of the word. As a mother of a child with HIV, you will experience the depths of parenthood in a particularly intense, rich way.
In 1996, I had the opportunity to view the AIDS quilt when it was on display in Washington D.C. Walking slowly up and down the length of the AIDS quilt, I was touched by the stories each panel represented. Panel after hand-wrought panel gave testimony to the drama, the love, and the pain played out over and over again among seemingly endless families. I remember pausing over by the quilt panel showing the picture of a little three year old girl who had died from AIDS. Admiration for mothers like you filled my heart. I am so thankful that your baby has you for a mother.
Nutrition is an important factor for HIV+ children — it is important for a child infected with HIV to receive the same excellent nutrition as other babies. All too often, children with HIV are deprived of the nutrition they need for proper growth as the result of chronic diarrhea. When symptoms of HIV infection begin to develop, most children benefit from liquid nutritional supplements, such as Pediasure, Ensure, or Boost. These all help to provide the maximum nutrition possible.
Far better than replacing the nutrients lost by the progress of the disease, is preventing the disease from progressing. This is finally possible for most children!
Dr. Art Ammann, a personal friend of mine, is the former Director of the Pediatric AIDS Foundation and founder of the Global Strategies for HIV Prevention. When we discussed the topic of HIV, he spoke with great passion and enthusiasm as he described the treatments that have been developed for children with HIV. Now, almost all children with HIV can be treated to the point where the virus is undetectable. HIV has become a chronic disease to be managed, rather than a relentlessly fatal disaster. Children with HIV are now living longer due to newly available drugs. We expect the lifespan to continue to increase significantly as even newer treatments are developed.
In the early 1990s, there were few FDA-approved drugs for children with HIV. Fortunately, today, an array of effective medications are available. The most current list of FDA-approved medicines to treat HIV in children can be viewed at www.fda.gov/
Newer drugs and treatment combinations are constantly being developed (see www.hivatis.org). Sometimes, newer medications are not immediately FDA-approved for use in children. This does not mean, however, that they cannot be used to treat children. In cases when approved medications have failed, the use of drugs not yet approved for children may be critical. Dr. Ammann writes:
“Once a drug is approved for the treatment of HIV in adults it can be used by physicians to treat children, if the parent(s) or guardian(s) and the physician choose to do so. The physician will need to adjust the dose, and for very young infants, will need to provide advice on how to give the drug if it is not available in a liquid form.
Waiting for full FDA approval of an HIV treatment for children may take years or may never happen. Since early treatment is key to the success of therapy, children should not be denied the benefit of a potent new drug while waiting for the FDA to act.
There are risks involved, but for most of these new therapies, the benefits outweigh the risks.”
There have been good advances not only in the management of infection with HIV itself, but also in dealing with the opportunistic infections associated with AIDS. This is because doctors have gotten better at recognizing when treatment of infections is warranted, and knowing which drugs should be used for which infections. The drugs themselves are not necessarily new, but as we continue to learn more about how HIV and AIDS work, we are becoming more skilled in treating them.
Lucie, when you decided to adopt an HIV+ baby, you did a noble and wonderful thing. I am sure that you prepared yourself for the worst possible outcome. It is my hope that, with the new drugs that are now available, you might not face that outcome. Nonetheless, you will have a difficult time ahead. You also have one very lucky baby to have a mom like you.