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Duplication of Chromosome 2 – The Story of James

Duplication of Chromosome 2 – The Story of James

We have one living daughter and very much wanted to grow our family. When she had just turned a year old we somewhat surprisingly found out that we were pregnant again. Once we got over the initial shock, we were quickly excited to welcome the baby and found out at 20 weeks that it was a boy.

I was very nauseous, as I had been with my daughter, but we were excited to grow our family and even moved to a bigger house so he would have his own room.

It was at the 20 week scan that they noticed some minor abnormalities (just the size of his nose) and sent me to get some additional scans. We were not too worried.

From there, things got worse and worse at every appointment. It is hard to relive it. The next scan revealed brain and heart abnormalities, followed up by a MRI and an amniocentesis.

While the MRI was somewhat normal, after a few agonizing weeks we got the genetic results and found out that he had almost a complete duplication of chromosome 2.

We met with the genetic counselor and tried to find out as much as we could from fetuses and children with similar conditions. We suspected he would have severe intellectual disability, psychomotor disability, kidney cancer, lung difficulties,  heart defects, and also possibly neural tube defects.

I had never, ever wanted to consider a termination, but as we talked (and had the worst few days of our lives), that seemed to be the kindest and most compassionate option.

We could not imagine his life with so many difficulties. Those 2 days where we had to make the decision were the worst days of my life.

I truly believe what I have read and seen so many times: that I chose to suffer so that he would not. How true that has been.

I got an induction of labor and we said goodbye on June 10, 2020. I am grateful now that we got to get his pictures, footprints and hand-prints even though it was so hard at the time. I look at the pictures frequently to remember him.

We are believers in God and Jesus, and it comforts us to know that our son, James, is at peace in Heaven. We are grieving deeply, and some days are very hard and some days are easier.

We love you baby James and we miss you deeply. We wanted you here with us, but we had to let you go.

This post was submitted by Carolyn- a brave Mama to share her story.

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