Today, I came across a post that asked, “Would you have an IVF baby with three parents?”
Recently, The British House of Commons voted in favor of an amendment which would allow IVF babies to be created using biological material from two women and one man in order to prevent genetic defects.Technically, 99.8% of the baby’s DNA would come from the mother and father. The other .2% would come from a mitochondrial donor.
My daughter was diagnosed with a chromosomal abnormality at four years old. When we were told that Josie was missing part of her 18th chromosome, we did not know what to expect. There were delays that we knew of. Previous diagnoses of hypotonia, dyspraxia, and mild cerebral palsy is what brought us to the neurologist initially. We were caught off guard, having been reassured that Josie was just going to grow out of “this.” The testing was just a formality to rule out any genetic abnormalities. After handing us the lab reports, the doctor looked at us and said, “She is still the same little girl you walked in here with.”
Presented with the worst case scenario, we took off like treasure hunters to confirm or rule out the possible complications. Each specialist ran a gamut of tests to figure out which of her bodily systems were affected.
My husband and I were tested as well to see if one of us carried with defective gene. It turns out Josie’s chromosomal deletion is considered a de novo mutation. We had the same odds of having another child with same deletion as any other parent would.
I still wonder what we would be facing if we did pass this deletion on to our other children as well? Additionally, what would that mean for our children’s children? In those weeks until we knew the results, I wondered how my children would react to being faced with having a child with challenges. Would they turn to IVF in the hopes of having a child free of disability or disease?
I never had an amniocentesis despite being labeled AMA for my last few pregnancies. It never mattered to me. If I knew before Josie was conceived that she would be missing a tiny piece of genetic material, would I have done anything differently?
Would I have wanted her broken piece of genetic material replaced by a whole?
I wish I could make life easier for Josie, but she is fierce all on her own. Do I wish her speech was better or that she could write like the other kids in her class? Of course I do, but it will come in time. If it doesn’t, then that will be another part of Josie that makes her who she is, and she is amazing. If she was not missing that piece of her 18th chromosome, then she wouldn’t be Josie. She would be a different child, that I would undoubtedly love and cherish, but she wouldn’t be THIS child. We have all benefitted so much from having Josie in our lives. I wouldn’t be the mother I am today without the lessons she has taught me. Josie has made me a better person. Our lives might be easier if Josie’s chromosomes were perfect, but without facing these struggles, each member of this family would be different.
Our situation is different in that Josie’s chromosomal deletion is not life threatening. I cannot stand here and say that I would want to watch my child suffer and die if I knew it could have been prevented. Science is wonderful and scary all at the same time.