A new way of life.

Doug and I learned about our baby's disability during the endless tests routinely given during pregnancy. We never imagined that the alpha-fetal protein test that I took would begin a new way of life and a new way of thinking for us. I had met a few people who had been given some frightening results from tests that later proved to be "false positive." The results of my blood test were accurate, however; sonograms confirmed our baby had spina bifida.

We learned a great deal about our child's disability before she was born. For example, we were told she would probably never walk (though I am happy to report that she does). Doctors informed us that she also had severe hydrocephalus (water on the brain) and immediately after delivery would need surgery to place a shunt in her brain to help drain the spinal fluid into her abdominal cavity. We also learned that most people with spina bifida need to be catheterized to urinate. None of these things surprised or even worried us.

Educating ourselves

One thing did surprise us. We learned that people with spina bifida are often allergic to latex. I remember the moment Doug's sister gave us the information packet she had received from the Spina Bifida Association of America. We read about latex allergies and felt as if we were facing a brand new diagnosis we needed to prepare for.

As we read the list of common items with latex, we were stunned! Diapers, pacifiers, baby bottles, nipples, balloons and many different types of medical equipment all made the list. Doug and I learned that regular exposure to latex could be the major contributor to latex allergies in people with spina bifida. Now we knew that we had to avoid exposing our child to latex from the very beginning.

From the moment RoseMarie was born, Doug and I were her advocates. Immediately following an emergency C-section, our daughter was admitted to the intensive care nursery (ICN). I had just enough energy to admire her and absorb what all of the doctors were telling me. Meanwhile, Doug was alerting the nurses in ICN about latex precautions.

Educating others

At first, the doctors seemed to question the reality of latex allergies. We remained firm in our decision to keep her environment latex free and eventually, after presenting literature to the physicians about latex allergies, they began to work with us. Our next step was to have RoseMarie tested for latex allergies because we had seen a rash from the silk tape used in stabilizing her IV ports. The results from a blood test showed that even with minimal exposure, she had a mild, but positive, sensitivity.

Taking precautions

Rosemarie was in and out of the hospital for the first three months of her life. She had eight surgeries by the time she was four months old. During a particular surgery, the prevalence of latex and the degree of vigilance needed was brought home to me. She had a broviac line placed in her chest, and I was in charge of flushing the line with Heparin, (a sodium injection) every day. it occurred to one of the nurses that the bottle of Heparin came with a rubber stopper through which I was supposed to push the syringe to draw in the medication. The stopper could have easily included latex materials and an alternative had to be found. Luckily, I was able to find a special device called a "Decapper" (made by Kebby industries in Rockford, Illinois), which removed the top of each bottle before I used it. I had to become innovative for RoseMarie's safety!

I wish that I could boast that our home is latex free, but all I can say is that we have been careful, and buy latex-free diapers, pacifiers and teething rings. We have even gone as far as calling the 800 numbers on every package that we buy just to confirm there is no latex in the product. Customer service departments have made checking a lot easier. They call the manufacturer for me! Manufacturers have been responsive, as well. One manufacturer of a non-spill cup contacted the engineer responsible for the cup's design and asked for a modification for a latex-free alternative.

When Rosemarie was about six months old, she began early intervention. I asked the staff to use latex precautions whenever possible, explaining that even though she had never experienced a serious reaction, the allergy builds with exposure. With continued exposure, she might experience a life-threatening reaction such as anaphylactic shock.

Sometimes I have felt that I am being too "preachy," but I believe it has paid off. Rosemarie's therapists have been careful not to expose her to latex in the equipment they use, such as therapy balls and gym mats. They even special ordered a wheelchair with latex-free parts for her.

Our friends and family have also been made aware of the potential risks. They make sure that mylar balloons are available at birthday parties instead of latex ones. It makes us feel great to know that everyone who knows our daughter is watching out for her. We try our best to keep latex far away from her, but we also have to be realistic. Even erasing a pencil mark requires a product with a latex-seal eraser. As "preachy" as it may seem though, I will grab my soapbox and launch into a sermon anytime to keep my daughter safe!