| Just as no two CF patients have the same course, I�m sure each person who becomes pregnant will have their own unique experience. My pregnancy was quite a few years ago and I�m not sure how relevant much of the information is to someone who is contemplating a pregnancy today. My main reason for writing it down is to provide some frame of reference for other patients, something I didn�t have and wished for when I was going through it 16 years ago. I�ll give you a bit of background about my CF because that is really where the story begins�. I was diagnosed when I was 19 after many years of being ill. Growing up, I didn�t have any digestive issues, my symptoms were all respiratory. I had a cough from the time I was about 10 years old until the time I was diagnosed and began treatment. I was quite ill during my adolescence and had frequent bouts of hemoptysis from the time I was 16. Because I wasn�t malnourished appearing none of the doctors I went to see ever considered cystic fibrosis. Long story short, I was finally diagnosed, my underlying infections treated and my health improved dramatically. I was able to finish college, move out on my own and work full time. My pregnancy came as a surprise as I had been told I could never have children at the time of my diagnosis. I was 24 years old at the time. I immediately contacted my CF team and went in to meet with them. Because my FEV1 was in the 70s at the time my doctor felt that I had enough lung function to be able to safely continue with the pregnancy. I was elated and embraced the idea wholeheartedly. A family! I had never even considered the possibility. We consulted a genetic counselor who was able to test my husband for a few of the genetic defects, not many had been identified back in 1990. His tests came back negative, and although we knew that wasn�t a guarantee, we were cautiously optimistic and decided not to pursue amniocentesis, as that carried with it a small risk. My CF doctors had very little experience with a pregnant PWCF. I was referred to a high risk OBGYN and a pulmonologist at another hospital, though my doctors at the Children�s hospital where I received my care continued to follow me and treat my CF. During the first trimester I had a lot of morning sickness and had a very difficult time putting on weight. Every time I would cough I would vomit and I ended up losing weight in the first 3 months. I remember drinking a lot of Ensure and eating quite a few saltines. Once that phase passed I was able to eat better and begin gaining weight. I did consult a nutritionist who gave me some advice and by the end of the pregnancy I had gained almost 30 pounds, which was the goal. Another issue I had difficulty with was with my energy. I was working full time about an hour from where I lived and worked long hours. I was often exhausted and would come home from work only to eat and fall into bed. I was very lucky that my husband was supportive and would have a meal ready for me when I arrived home so I wouldn�t have to prepare anything. He also packed me enormous, healthy lunches to eat at work. I couldn�t have managed without his help. I did require one course of IV antibiotics at 7 � months along. My cough had increased, I had very little energy and I was generally feeling pretty lousy. Because I was pregnant I wasn�t able to be admitted to the Children�s hospital where my CF doctors were so I was treated by the pulmonologist at the hospital where I planned to deliver. I was told the antibiotics wouldn�t harm the baby. I underwent 2 weeks of IV s and left feeling much better than when I had been admitted. As my belly became bigger towards the third trimester I felt much more short of breath due to the size of the baby pressing up on my diaphragm. It was difficult getting around and performing everyday tasks. I stopped work at 36 weeks, planning to take the last month off. I went into labor two weeks early and had an uncomplicated and relatively easy delivery in the hospital. After 6 hours my son was born, a beautiful healthy baby boy, 6lbs 13oz. I was discouraged from breastfeeding him as my doctors felt that my body needed a rest after the hard work of the pregnancy. There was also some concern that CF breast milk might have a higher concentration of sodium, though nobody was sure. At the time there was little information on CF moms �and no internet!�so I was unable to find out any information on my own. I decided to follow the doctor�s advice and did not breast feed, though if I had it to do again knowing what I know now, I would. All in all, I had a very positive experience with my pregnancy. I realize I was very lucky. Yes, there were some speed bumps in the road, but for the most part I had few complications. Would I do it again? In a heartbeat! My son, who is now 16, is an amazing person and I feel so fortunate to have been able to experience the miracle of pregnancy and having a child. by Kim, age 41 with CF. I live near Boston, Massachusettes USA and am retired. Feel free to email me. |
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