It was 1981. I was already a young mother with a little boy, Jordan who was only 14 months old. It was autumn in Palo Alto, CA. October 10th (his grandfather's birthday too) to be exact and here I was having another baby. I labored with our first for over 2 days. (50 hours) Fortunately, this seemed to be going quicker. Then the doctors gave me cause for worry. They spotted meconium (where the baby has a bowel movement while still in the womb) and they were worried that the baby might have gotten some in his lungs. They told me to push because they said he was in distress and he needed to be born now!
As soon as he was out, they whisked him off to the neonatal intensive care unit. (NICU) They cleaned his lungs out and told me he should be fine. For the first month, he did seem fine. But then, with each visit to the pediatrician, things looked worse and worse. My beautiful boy wasn't gaining any weight. Even worse, he was losing weight. The doctors called it "failure to thrive". And they made me feel like it was my fault. But I knew it wasn't. I wasn't new at this. I already had another child who was healthy as any child could be. My gut was telling me something else was wrong.
Jeremiah was 6 months old here. He was not yet diagnosed with CF so he looks very hollow from being undernourished.
Jeremiah ate like a horse, in fact he cried like he was hungry ALL the time, but he wasn't gaining any weight. And EVERY diaper change had messy, runny, watery diarrhea. I knew this just wasn't normal; I called the pediatrician so many times we were on a first name basis. They ran so many tests on him they were running out of tests to do. Most all the tests were painful and invasive, and all came back negative. He also had a horrible ugly rash all over him. So, I was told to stop breast feeding him. So we also tried every kind of formula that existed. He still didn't put any weight on.
He's now 7 months old, and he weighs less than 10 lbs. Most other babies at this age are holding their head up, rolling over, sitting up, and some are even crawling. My Jeremiah was so weak, he couldn't do any of those things. In fact, the doctors told us to make him comfortable and, "...take him home to die or,' the Dr. said, 'there is one more test we can do, but it would still be a death sentence if it came back positive." I said, " I don't care. If he's going to die, I want to know what killed him." We were sent to Stanford Children's Hospital, now called Packard Children's Hospital for a "sweat test". Non invasive, and not painful. It was positive.
By now, this was May of 1982 and cystic fibrosis was very rare. Almost unheard of. Back then it only affected Caucasians. Also in 1982, we were told not to expect Jeremiah to live past the age of 5. But we ignored this. We immediately got the name of the best renowned Pediatric Pulmonologist who specialized in CF in the country and he was right there at Stanford! Jeremiah was started on digestive enzymes, (back then for babies they gave them viocase in powder form), anti-biotics and nebulizer treatments (albuterol) for his bronchitis. Of course we were also taught how to do his chest PT's.
After 1 month of being on this treatment, Jeremiah not only gained 20 lbs, he gained the strength and muscle he needed to hold up his head, roll over, sit up, and crawl all by his 8 month birthday. Oh, and the rash turned out to be an allergy to milk, all milk, including my mother's milk. Which he quickly outgrew by his first birthday. He loves milk today and can't get enough of it! **
We never did listen to anyone that tried to tell us to give up on planning a future for him. We raised Jeremiah always with a knowledge that he has a future, as normal as yours or mine. Because none of us knows how long we will be here whether you have CF or not.
When he turned 5, research then said only half were living to age 16. When he turned 16, research said only half were living into their 20's. When he turned 20, research said only half would live into their 30's. Well, he's 27 now. I guess he has always been in the "other" half.
We give thanks to our Lord for that.
Jeremiah 27 yrs old in VA Nov 2008
We'll see where research is when he turns 30. As long as research is always ahead of him, we're happy! I've heard many are living into their 40's now. I even heard of one lady that is 50. That's my age!
More on Jeremiah's younger years later
** We use whole milk and he mixes it with several tablespoons of (his favorite) chocolate Ovoltine. (Much healthier than Nesquik or Hershey's syrup), He supplements that with nutrition shakes such as Ensure Plus. Scandi Shakes are also wonderful for those of you who can get them for free.