Cystic fibrosis in newborns? Do you have a child with CF?

My daughter will be two weeks old tomorrow. We got a call from the pediatrician today that her newborn screening tests came back and she needs to go having further screening to test for cystic fibrosis. Did anyone have to do this and have the tests come back negative that they don't have it? Neither me or my husband have a family history of CF, so this was a surprise. I'm very worried and hoping it's a false alarm.

Does anyone have a child with CF? What symptoms did they have as a newborn?

I did read about CF online, but am curious about what other people have experienced with their babies.

Thanks for any information you have.

Most states screen for cystic fibrosis, usually by measuring immunoreactive trypsinogen (IRT) in dried blood from newborns.

The reason trypsinogen is used is that it is a measure of pancreatic function, which is altered in cystic fibrosis.

The important thing to know is that, even if the IRT is high in the first test, additional testing will be needed to exclude or confirm the diagnosis.

Newborns do not always have symptoms of cystic fibrosis. In 15 to 20% of cases, the first symptom is an intestinal obstruction at birth called meconium ileus. Other symptoms include recurrent cough, wheezing, chronic abdominal pain, loose stools, and failure to thrive.

Cystic fibrosis is inherited as an autosomal recessive, so that it is possible to be a carrier without knowing it. The gene would be expressed only when there are two copies present in the child.

I don't have a child with CF, but I have a number of friends with CF and friends with children with CF. Good luck with this!

When my son was an infant, he gagged and would cough until he threw up. The doctor said this was a symptom of cystic fibrosis and hospitalized him to do tests. He didn't have cystic fibrosis, it was asthma. So that was a great relief. They did tell me that the baby's skin would taste very salty if they had cystic fibrosis. I hope your baby girl is okay. I wish you the best.

CF runs in my family. The child in question will be tested as well as the parents. You see both the parents will have the same gene that causes the child to have CF. But not all of their children will possibly have CF. In my family the brother's and sisters didn't. My cousin who is in his mid 30's has CF. He got married and then had his wife get his eggs and they had twins and they are fine. Just 3 years ago He had a double lung transplant and is doing well. His kids are about 8 now also well. In the old days CF patients could die young. Another of my cousin's died at 16. That was back in the early "70"s. Today there is so much research. Oh and My male cousin not works in a Boston Hospital Lab looking for a cure for this disease. Always donate to CF. Best wishes to you all.

It could be a false alarm. I have Cystic Fibrosis and I am 42 years old. My mom was pregnant for my brother when they diagnosed me positive for CF. My brother does not have it. It doesn't have to run in the family. In order to have a child with CF both parents have to be carriers of the gene. Then there is a 50-50 chance the child my have it. The mutation of the gene I have is called the Delta F08. If you have two mutations of that gene then you have full blown CF, which I do. If he does test positive there is no way you could have know that it was possible unless you were tested before hand to see if you both carried the CF gene. If you don't know about CF then how would you have known to be tested for it. I wish you the best and my prayers are with you, and remember I am 42 years old and still going strong. Stay positive and I'll pray for a false alarm.

I have a 17 year old son with CF. He was born 8lbs and at 3 months of age was still 8lbs because he was not absorbing his fats and proteins. He was also coughing quite a bit soon after he was born. Our family also does not have a history of CF. Once we had him on his meds to aide in digestion and his breathing treatments, he began to do very well. I know it sounds very overwhelming right now. Take it one step at a time and get in with a good CF clinic if your child has CF. There is a very good support community for CF. If you ever need more support from a mom that has been through this, feel free to e-mail me direct.

My sister has Cystic Fibrosis, and my mother said when she was born, she noticed something different about her. She was jondis, low birth weight, trouble picking up weight, and wheezed.

Those are just some symptoms, but I would definately listen to the doctor and do whatever is necessary.

I wish the best for your daughter! Take care!