A Diagnosed Disease for Twins

--Cystic Fibrosis--

and Something Positive in Return

by Kathy Tucker

(Originally posted Nov. 3 2002)--I still remember hearing the great news. Twins! After that initial diagnosis and throughout my pregnancy things would be fine and our identical twins, Justin and Wesley, were born March 3, 1996.

Declared to be healthy at birth, a turn of events would prove otherwise.

Once discharged, my twins' symptoms would not go unnoticed and had me quite worried and concerned. The early symptoms included apnea spells, turning blue, screaming with pain after eating, being extremely hard to burp and bellies that were hard as a brick.

Using glycerin suppositories helped with the gas buildup on their bellies and relieved some of the pain for them. There were at least 10 bowel movements that looked unhealthy, per day multiplied by two babies, WOW! Breast and formula was not tolerated at all. My concerns were expressed to the doctor and a series of tests began. My twins would be diagnosed with "failure to thrive", reflux, and respiratory distress with wheezing.

Medication was given for the reflux, breathing treatments every four hours for the respiratory distress, and apnea monitors placed on both of them. Our daily schedule in those early days was a nightmare. On top of the every four-hour breathing treatments schedule, medications, and apnea monitors, I had to breast and bottle feed, work and work each baby just to get one small burp out so they would not turn blue from the pain and change at least 10 poopy diapers per baby. We had to fix them extra high calorie formula mixes to replenish the weight loss from failure to thrive. All I could do was sit down and cry, I was so exhausted with all that I had to do. My husband was there to help me but when he was at work and my daughter at school, I had no one to help.

Then the postmenopausal symptoms set in and talk about intensified!! WOW! It's a lot worse than having a singleton for sure.

At three months, they were both hospitalized with respiratory distress, bronchitis, wheezing and the early stages of pneumonia, Things did get kind of better and we were discharged. We would continue home breathing treatments and medication for the reflux.

Then along came another critical state for both Justin and Wesley. Both boys were diagnosed at six months with severe respiratory distress, pneumonia, and severe weight loss. These symptoms would worsen their condition. Their bellies would be so hard--like a balloon. There was very poor oxygen exchange. Poor Wesley, he was about to give up, he just simply could not breathe anymore. A decision was made to transfer the most critical one. Life flight was not available at that time, so the next best thing, a critical care doctor, nurse and ambulance was called. I was horrified of leaving one at the hospital where I worked and one being admitted at another hospital. I had no sleep, I looked like I was a zombie or something. I cried the whole way there in the ambulance. Why is this happening to us? I asked myself.

With all the symptoms in mind and the critical care treatment that was given to both boys, a pulmonologist was called in for evaluation for Wesley. Still both in different hospitals it was decided that Wesley would be tested for Cystic Fibrosis. Classic symptoms of Cystic Fibrosis, the pulmonologist said. So a test was performed.

The news would be delivered from the doctor. My heart dropped ten-fold. My knees felt weak and I hit the floor. My twins were diagnosed with Cystic Fibrosis--a life-shortening disease. I was in major shock to say the least. I cried and cried to anything and everything that someone said to me for the next three years. I had lost my father seven months prior, and grandmother that same year, was having post menopausal symptoms, suffering from sleep deprivation, and now this news of them having CF. I was devastated. It was the most horrible year I had ever went through.

Something positive in return was good news that I had not realized at the time I was being handed devastating news of my boys' health. I realized that in short of bad news there is always good to follow. It may not be right away, and there is always a hill to climb when you seem to have fallen short in life. For me, the good news was now that Justin and Wesley had been diagnosed and treatment was well underway.

The climb would get easier and easier as time passed. The medications would work. The pain would be relieved. The lungs would have good air exchange. The bellies would not be hard as a brick anymore. They would decrease their bowel movements and start with some weight gain. The happier babies, the happier toddlers, the happier boys would come out of them. Which by the way, made me a happier mom!.

I set out to find others who may have the same situation as myself because I felt really alone having twins with Cystic Fibrosis (which is very rare for twins). I had originally posted on Twinstuff, but I had no luck finding anyone to fulfill my loneliness, so, I kind of lost my way. I am so glad I made my way back to Twinstuff. Even though, I still feel alone, I feel blessed and the people I've met on the Twinstuff forum boards are awesome!!!!!! Thanks Friends for all your caring ways towards others and me on the Twinstuff Boards.

Leaving you with my own quote! If there was a cure today for Cystic Fibrosis, you would hear me across America! YESSSSSSSSSSSSSSSSSS!!!!

Kathy Tucker