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Ivan
I enjoyed visiting your website, and found a great deal of information to help my family navigate this new territory of Factor V Leiden. I am a 54-year old grandmother who had never heard of FVL until three years ago, when my oldest daughter, Chelsea, became pregnant at 22. Her pregnancy was uneventful until the end of her 24th week, when she began swelling up and having horrendous headaches.Since I had severe eclampsia with my last pregnancy, I was very concerned. On the second day of what appeared to be uncontrollable swelling, I convinced Chelsea to let me take her to the ER. God bless them – the med staff had her in L&D within five minutes of our arrival, but it was a terrifying time as they diagnosed her with severe, sudden-onset pre-eclampsia. Her symptoms worsened at a terrifying rate, and it was soon clear that the doctors were doing an incredible balancing act, trying to continue her pregnancy without killing her or the baby. Fortunately, she doesn’t remember much of those awful days, but her husband and I do. After only five days, during which she suffered terribly, the doctors announced that they had to deliver the baby or Chelsea would die.
Three hours later, her son, Christopher, was delivered weighing only 1 lb 2 oz. Chelsea and her husband, Jason, basically took up residence in the NICU with Christopher, who was such a fighter, but sadly, he only lived 29 days. The headstone on his grave has a little pair of boxing gloves as a tribute to his fighting spirit.
The story doesn’t end there. Within a few months, and against the recommendations of pretty much everyone from doctors to her mother, Chelsea became pregnant again. She immediately began a regimen of daily Lovanox injections, and we prayed daily that this pregnancy would be different.
I think it must have been doubly frightening for Chelsea since the memory of the days before Christopher’s birth were so fresh in her mind. Sure enough, as she approached her 24th week of pregnancy, those familiar symptoms began again, and once more, we were in the hospital, hoping that this time would be different. Another emergency c-section on the first day of her 25th week (Sep 8, 2006), and son Ivan Christopher was delivered weighing only 456 grams (under a pound).
The medical staff at Madigan Army Medical Center, Ft Lewis WA, were doubly committed to pulling Ivan through each crisis, and laughed and cried at each milestone with us. Once again, Chelsea and Jason spent nearly every waking moment at the NICU, and I’m happy to report, that this time we had a much happier ending. Ivan left the hospital in February 2007, and still holds the record for the smallest baby ever born at Madigan to survive. He’s had a few medical issues, but overall is a pretty healthy little boy. We recently celebrated his second birthday, and I’m grateful that he is such a normal little boy that it’s easy to forget how frightened we were when he was born. We thank the incredible medical staff at Madigan every day.
Chelsea insisted that everyone in the family get tested for FVL, and it turns out that the women in our family are carrying the banner for this disease. Both her sister, Courtney, and I have a smaller number of markers for FVL, but enough for me that I was taken off BCP and put on aspirin therapy. My mother, who is 89, was recently hospitalized for deep vein thrombosis, and of course, we made sure her doctor was aware of the FVL just in case.
Thanks for giving me a place to tell this story.
Carole
Lakewood, WA