Our Baby Story: Raising Awareness

A Merriam mom shares the story of her baby and the care they received at Children's Mercy.



In the late spring of 2010, I gave birth to my second daughter, Makayla. I had a normal healthy pregnancy and delivery, and my first daughter, Mackenzie, was a proud big sister! Shortly after delivery my husband and daughter wheeled Makayla to the nursery for her first bath. During Makayla's bath, the nurse noticed that she had several lesions on her body. One that caught the most attention was the size of a pencil eraser. My husband's proud heart dropped into his stomach as he thought, "What's wrong with my new baby girl?"

My husband broke the news to me that something was wrong and pointed out to me the lesions that they had found. I was worried but tried to play it off as no big deal. I reasoned that the lesions looked to be healing and scabbed over. As we settled into our new room after delivery, different doctors and nurses came in to peek at her lesions. Nobody had an answer, and we had to wait for the pediatrician to take a look.

The next day, the pediatrician came to do her exam and she, too, had no idea what was wrong. She referred us to the Children's Mercy dermatology clinic and, thankfully, was able to get us an appointment much quicker than the typical months-long wait. I finally cried because now it was becoming real to me that there really was something wrong with my baby.

She was 10 days old when we took Makayla to see the dermatologist at Children's Mercy North. After a few days, I received the call from the dermatologist. At first he gave me the medical terminology and then broke it down so that I could better understand: What her biopsy revealed was Langerhans Cutaneous Histiocytosis (LCH). He continued to explain to me that this is a form of malignancy like cancer and could affect many of her organs or bones and, in some cases, be fatal. Makayla would require follow-up tests to see whether any of her organs or bones were involved. The doctor also advised me strongly not to Google this disease, as I would only be frightened by the horror stories.

I called my husband at work and told him that the test results were back and relayed to him what the doctor told me. All of our questions and fears about what would happen next seemed to hang in the air as we waited to see the radiologist and have more extensive blood tests at the end of June.
During that wait, our entire family came together for comfort and to compile a list of questions about the disease. Every day with Makayla was a blessing. I held her as much as possible, thinking to myself that love will make her strong. On the day of her radiology, my husband and I had to watch from behind a filtered window as the x-ray techs stretched my almost-1-month-old daughter into positions that newborns don't like—she cried uncontrollably. I could only stand back, cry and watch as they did their job.

When we got the test results, we had some good news: The LCH appeared to be affecting only her skin. This was a huge relief, but we still had so many unanswered questions. We were directed to the Children's Mercy oncology office where we would meet the doctor who would be seeing Makayla for her LCH and who would be able to answer our many questions. The oncologist reported that she has the best form of this disease and would be seen every 3 months for the first year to monitor for recurrences or signs of LCH affecting her anywhere else.

At this appointment, we also were introduced to the Histiocytosis Association, an on-line education, resource and support community. It was here, that I learned all about Histio and was able to connect with others dealing with this disease. Through the organization’s website, I have learned ways to bring awareness and fund-raising to this society to help find a cure.

Thankfully, I am blessed that my daughter has been affected by this disease only in her skin and that it has healed on its own. Makayla will need to be aware of her disease for the rest of her life and be alert to symptoms of LCH. My job as her mother is to raise awareness and funding so that there will be a CURE.

Amy Gonzales lives in Merriam with her two daughters.

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