Megan Neville takes us through the IVF/PGD process.
Our firstborn son Aidan was diagnosed with CF through newborn screening at 8 days old. The initial shock and devastation was overwhelming. I could not believe that this perfect looking baby we created out of love was facing this awful disease. As we learned the realities of this disease as well as the risk of people with cf being near each other, we knew we would never take the 25% natural chance of passing this to another potential child.
We looked into egg donors, fostering, adoption and then we learned of IVF/PGD. There was SO little information out there for us. I found it so strange because when I was pregnant, everybody seemed to have an opinion or advice. But now that we were actually desperate for advice and support on how to grow a healthy family, nobody knew how to help nor did they know what to say to a mom of a sick child.
After a lot of our own soul searching, research and education we moved forward with IVF/PGD when Aidan was a bit over two years old. There were so many obstacles from the beginning and we knew there was still no guarantee at the end of it but we did not want CF to crush our dreams of a larger family.
Twelve years ago, PGD was not as commonplace as it is now. It was still considered experimental. We had to use a geneticist in Michigan in coordination with our NJ IVF center. It was a remarkable science and I found myself truly amazed despite the hundreds of shots, constant doctor appointments, uncovered costs, and emotional turmoil. After two cycles of IVF, our 3 day old embryos each had a cell taken from them, their cells were flown to Michigan on their own private plane, biopsied while the rest of their cells continued to multiply in a petri dish in NJ and on Day 5 we had results. Because of the low number of embryos I had, our doctor said I needed a miracle. Our miracle Gavin is now eleven. When Gavin entered Kindergarten, we decided to give IVF/PGD one more try. Grace is now six. They are both CF free.
While many supported our choice on how we ultimately decided to grow our family, there was criticism.
- “IVF/PGD is to create designer babies.” I had to laugh that one off because if anyone were to look at Aidan…I already had a designer baby. He was blonde, blue eyed, beautiful, smart. I didn’t need another designer baby. I just longed for a child that would be free of the terminal illness that was already robbing his brother of his health.
- “IVF/PGD is playing God.” Well….I kinda ‘already’ was playing God. The very nature of medicine is playing God. If I were to let nature take its course, Aidan would not have survived a year. I was playing God every single day just trying to keep my boy alive. Aidan’s life depends on life saving medications and interventions every single day. The God in which I believe would not fault me for trying to give our children the best chance at health.
- And finally..”What will Aidan think?” That was probably the hardest because Aidan was only two years old and I had no idea what he would think. I did know one thing. Aidan was already reeling downward with the emotional and physical complications of CF. He was two, a very smart two year old. He would sob the night before a surgery “Why would a God that is good do this to little boys?” I had no answer for my two year old. But there was an answer moving forward.
Aidan is fourteen now. He understands that we did not know we were CF carriers when we started our family. He comprehends how Gavin and Grace were brought into this world. He totally gets why we ultimately chose this route. He does not begrudge us. He does not think we love him less.
Fourteen years ago, life seemed bleak. We were a young married couple with a terminal baby and the hopes of future children seemed non-existent because of all the complexities of CF.
But now? This family of five that we created out of love….and science…is the greatest thing I could have imagined. Aidan is still blonde, blue eyed and beautiful. Gavin is our ‘experiment’ turned miracle who claims that he will be the first one to cure CF. And Grace? She is our bonus baby. She is the caretaker. She flushes Aidan’s port, she organizes his meds and she tells him that ‘Sixty five roses isn’t that bad’ because he gets to miss a lot of school.
Life is not perfect; life is messy. But this messy life is just perfect for us. We are forever grateful for the scientists who invented this amazing technology for Gavin and Grace as well as the scientists who are working tirelessly for the cure for Aidan and all those with CF.
The Neville Family
