So today of all days is the day I choose to tell this story. Today I am deeply grateful for science and genetic testing because without it Leo might have been born with CF. And to me, the idea of the possibility of knowingly bringing a sick baby into the world terrified me.
When I was a child, I was hospitalized numerous times with asthma. I was poked and prodded, put on special diets, and was on daily breathing treatments. The most terrifying was waking up in the middle of the night not being able to breathe. That was difficult enough. I would not bring a sick baby into the world.
People with CF can have a variety of symptoms some as life threatening as needing a lung transplant The average life expectancy for people with CF varies and is now around 45 in the US assuming you have access to medical care. For us, IVF was our only recourse.and in the US, I was quoted about $50k with testing and medication for 1 IVF try. I came home and sobbed. I could never afford to have a child. After all, I knew people who had undergone IVF multiple times without success.
What is CF? I had heard of it but I didn’t know what it was. Cystic Fibrosis is a recessive hereditary disorder affecting the endocrine glands. It causes the production of abnormally thick mucus, leading to the blockage of the pancreatic ducts, intestines, and bronchi and often resulting in respiratory infection.
I never knew if I wanted to be a mom. There were things that I wanted more. Then when the world began to slow down, I considered being a mom. I went to a fertility specialist at UCLA to make sure everything was good to go. They found a polyp. No big deal. I had it removed. Then because of my age, the DR. recommend genetic testing. Everyone over the age of 35 is encouraged to get tested. This is when my husband and I both discovered that we are cystic fibrosis carriers. We don’t have CF but we carry the gene and we both have different mutations.
When both parents are carriers, there is a 1 in 4 chance of being unaffected, a 1 in 4 chance in having CF and a 1 in 2 chance of being a carrier. My question is why wait to test individuals to see if they are carriers after the age of 35 when we are born with these genes and nothing will ever change. Once a carrier always a carrier. This also means that my parents are carriers and so are my husband's parents.
Carrier rates of CF:
European Caucasians, Ashkenazi Jews – 1 in 29
Hispanic Americans – 1 in 46
African Americans – 1 in 61
Asian Americans – 1 in 90
In the U.S., 1 in every 31 carries a mutation of the CF gene. 1 in 3200 have CF.
I do not know the specific carrier rate for Spain but 1 in 3500 have CF.
In Mexico, The Mexican Association of Cystic Fibrosis and other research groups estimate a disease prevalence between 1 in 5000–8500 newborns. If anyone knows more about this topic in Mexico please DM me. I also do not know the carrier rate for Mexico.
Fast forward, I have a healthy baby! How? IVF in Spain! Thanks to my FIL, we started researching IVF in a few countries. We landed on Spain and we landed in a clinic that had a pretty high success rate. What we liked about Spain was that I speak the language so understanding the medical journey would be easier. The clinics there have to report their results whether successful or not to the government in order to stay in business which offered us a sense of reassurance. Treatment there is way less expensive with testing and medication. They are there to truly help you get pregnant and not in it for the money like IVF is in the United States.
Our cost for IVF in Spain was roughly $10-12k total. We are eternally grateful to science, to be able to be fortunate enough to go overseas for treatment even in the middle of a pandemic, for the embryologist, the doctors, the nurses and the assistants at the clinic and the correspondence via email and those 2 AM zoom calls.
I am grateful for my body, my choice, and my health care is important to me. Advocate for yourself. No matter your age, ask to be genetic tested if you are concerned. I am here to bring more awareness to fertility, genetic testing, and CF. I’ve learned so much and we are all walking miracles.
All this to say is, this our story and we are so grateful for our journey and Leo. Happy Day of Gratitude to all. May this day and everyday be filled with gratitude even in hard times.