There I was, having just turned 41 and thinking I’d never have the second child that I had seen in my dreams for years. Unexpectedly, the possibility came up that IVF was going to happen for me and my now ex. Vermont was the only state at that time that had an insurance plan which actually pays for IVF!! The second round actually worked! I found out at the end of April 2015 that I pregnant. After 9 months of dealing with hyperemesis in pregnancy, several gallbladder attacks almost leading to surgery (I was too far along), and 24 hours of labor only to result in an emergency C section with my daughter needing resuscitation, I knew I could deal with ANYTHING after all that!!
After a few weeks at home, I couldn’t figure out why my child had such a voracious appetite. She would act extremely hungry only 1-1/2 hours after spending a half hour breastfeeding her. I even added some supplemental formula to no avail. Her stomach really seemed to hurt her after every feeding. Horrible BMS over 13 times a day! The initial thought was a milk allergy as her half sister had the same thing. However her early visits to the pediatrician became very frequent as she had not gained any weight in weeks. The weeks became 2 months and she still was under 9 pounds (she was over 9 pounds at birth).
At one of these visits, her pediatrician mentioned her cystic fibrosis screen came back positive. As I’ve worked in healthcare my whole life I knew what Cystic Fibrosis was (I even was obsessed with the book called “Alex the life of a child” by Frank Deford in my teens). I also knew I wasn’t a carrier (I had extensive prenatal testing) so the thought was that my daughter was a CF carrier. Little did I know about the many, many mutations that aren’t routinely tested…
We went for a sweat test. The examiner said that my daughter “didn’t look like the typical CF baby” and she “highly doubted” she had CF. There was literally a 3% chance that my daughter actually had CF. I knew the sweat test was going to come back positive. I just knew it. And it did. The doctor was pretty taken aback that she had CF because only one gene showed up in testing (my daughter is one of 4 patients in the clinic who only had one identifiable mutation and a positive sweat test). However he looked at her one mutation which was identified and said she “got the golden ticket” because she would be eligible for Kalydeco. We saw the doctor before a second repeat sweat test who took out a bottle of Creon (a medication we all know well!!) and gave me instructions on its use. Met the whole group of CF providers and staff and Sydney received a beautiful welcome to the clinic basket.
So there we continued on with Creon in hand and somehow trying to add salt to her bottles. Her formula concentration was increased and I still breast fed as much as possible. I look back now and am amazed at how skinny she was in pictures.
After watching a Facebook live video of Gunnar Esiason who spoke of medical trials and encouraged people with CF to participate in them, I started looking for trials. I found one immediately and decided to call about one I saw listed. There was great interest in getting my daughter Sydney into the trial as she would be able to take Kalydeco immediately as the trial began. We went back and forth to Kansas City a LOT from when she turned 1 until age 3. She gained weight. She seemed healthier in many ways. Ultimately, she was responsible for the FDA approving Kalydeco to children ages 1 and up!!
I took about a year and a half off after Sydney was born (so many daycares did not want to take on her medications!!) and I’m thankful for that time with her. I currently work at a doctor’s office while she goes to early preschool. She’s strong willed and a leader and loves school and her friends so much. She is an absolute joy in my life and those around her.
What a journey it has been! There is something very special about children who have cystic fibrosis. We are lucky to have them in our lives.
This year 2019 was my first year at the “We Walk Together” Mother’s Retreat in Montana, hosted by The Cody Dieruf Benefit Foundation. I remember wanting to go last year but I was just too busy going back and forth with my daughter to Kansas City for the Kalydeco medical trial. The team at Albany Medical Center were very happy that I was able to go especially ay being a single mom and definitely encouraged me to take time for myself to go.