My husband, Jimmy, and I knew that we wanted to have children very early into our relationship and discussed how our family would come to existence at length. I have cystic fibrosis and I was four years post bilateral lung transplant when Jimmy and I started dating. Quickly into our relationship, I experienced some serious post-transplant issues that made having a family seem like a faraway dream. While we worked diligently to get my health on track, we discussed the ways that we could start our family in the future. We decided that based on my complicated health issues, including post-transplant lymphoproliferative disorder and diabetes, that being pregnant was not an option for us. Jimmy was afraid to risk my health in that way – he wanted to have children with me and wanted me to be alive to experience it with him. That left us with surrogacy or adoption as options and ultimately, we chose surrogacy.
Jimmy and I were married on November 9, 2013 and shortly after we had our first visit to the fertility clinic. Surrogacy is a complicated process that requires a serious commitment of time, patience and money. I remember talking to the psychologists regarding my fears with the surrogacy process. How would I find someone that I would trust enough to carry my most precious cargo? What if we went through this process and ultimately were not successful? Would the fertility medications interfere with my transplant medications and put my health at risk? We talked through our fears until we had a level of comfort and decided to move forward.
My husband and I went through testing and met with a genetic counselor prior to creating our embryos. We wanted to have Jimmy tested to see if he was a carrier of the cystic fibrosis gene, which would put our children at risk of having CF. As luck would have it, the test results came back and Jimmy was a carrier of the cystic fibrosis gene. We were utterly devastated and needed to make some difficult decisions regarding the future of our family. After some research and discussion with the fertility clinic, we decided to do pre-implantation genetic diagnostics (PGD) which would help us isolate Jimmy’s gene in our embryos so we could know if our embryos had CF.
We created our embryos and had them tested for cystic fibrosis. Sixty one percent of our embryos had CF while the rest were carriers. We made a decision to use two embryos that carried the CF mutation instead of the embryos that had CF. I understand that this is a controversial decision to some. Bringing a child into the world that would suffer from the same illness that I had was not something I was prepared to do. I know that I can handle my health hurdles, but I was not sure I could manage watching my own child suffer. My husband and I decided to use the information that we had and move forward in a way that was best for our family.
It took us a year to match with a surrogate after we froze our embryos. When we matched, every fear that I had regarding the surrogacy process melted away. We had met the perfect person – Sarah ( see main photo, right side) was caring, organized, and responsible. She is a mom to five of her own children and wanted to help someone become a mother. We implanted two embryos in May of 2016 and both embryos stuck. We were having twins and we were ecstatic!
My children, Abigail and James, were born in December 2016 and I will never forget that moment. They were six weeks early so I held them for a minute before they had to go to the NICU – and that one minute was life changing. We nursed our children to health and were able to take them home after a short hospital stay. Despite doing PGD testing, I was nervous that one of our children would have cystic fibrosis. I would kiss them and secretly wonder if their skin was salty. Abby and JJ both had the CF sweat test and the results were negative. That was one of the happiest moments of my life and I could finally breathe easy. I have no idea what the future holds for my children’s health and we will tackle whatever comes our way with fortitude, but I am happy it is not CF.
We plan to be as open as possible with Abby and JJ when they are old enough to understand my health issues and how they came into the world. Sarah is still a very important part of our life and we hope that she will be a part of the children’s lives forever. I am open about my health routine – testing my blood sugar in front of the children and they know my pill case as “mommy’s meds”. They have seen me do nebulizers before and watch me for a second before moving along to their toys. Most days my health does not interfere with our routine. On the days that I am not feeling well, I have a supportive husband and family members who step in to help. I would not be able to manage life with children, a chronic illness and a full time job without the help that is generously offered by family. Creating this family has been my greatest accomplishment in life and I cannot wait to see what their futures hold.
