Trisomy 18 and the National Milk Bank

TRISOMY 18

Over the last several months, I have witnessed an incredible expression of love mixed with unimaginable heartbreak. I met Christy in the spring at our first tball game. Her son, Cooper, was on the same team as Thomas. After a few games, Christy told me she was pregnant with her fourth child. She has 2 preschool boys and a teenage daughter. So, this baby was a surprise, but she was excited. As we began to develop our friendship - mostly at tball games and the neighborhood pool, I realized what a wonderful mother she is and how well she relates to her children. But we had no idea what she was about to face.

When she went in for her mid-pregnancy ultrasound, she and Ken found out they were having a boy, whom the family named Zachary. They were all really excited about adding this new precious little life to their family, but soon after the doctor hit them with the devastating news that Zachary had Trisomy 18.

You might be familiar with Trisomy 21 (AKA: Downs Syndrome). Trisomy 21 means there are 3 chromosomes in the 21st "position" where there should be only 2. Similarly, Trisomy 18 means there are 3 chromosomes in the 18th "position" where there should be only 2.

Trisomy 18 is also called Edwards syndrome (or Edward's syndrome) and occurs in about 1:3000 live births. Unlike Down syndrome, Trisomy 18 is usually fatal, with most of the babies dying before birth and those who do make it to birth typically living only a few days. However, a small number of babies (<10%) live at least one year.

This hit me hard because we had been told that Chase might have Trisomy 18. When I was pregnant with Chase, we received a letter in the mail telling us that there was something wrong with the baby and we needed to see a specialist. After a 3D ultrasound, the specialist told us he did not think Chase had it, but he could not be sure. So, although we were cleared, I did have a glimpse of what she might even be thinking, and it was unbearable!

Zachary had very many physical problems that were noticeable even to Ken and Christy on the ultrasound, and not long after their discovery, they lost him. It has been a very difficult process for their family to grieve, but I have been amazed at how Christy has handled it.

They have worked very hard at remembering him and making sure that their younger boys can stay connected to this baby they never got to see. One of the things that has touched me the most is how giving Christy has been.

THE NATIONAL MILK BANK

We were at her house several weeks ago, and when she opened her refrigerator, I noticed a breast pump. I didn't say anything right away but couldn't help but be puzzled as to why she would have a breast pump 2 months after losing the baby.

Just as I was about to ask, Christy told me that about 20% of women who lose their babies during pregnancy still get their milk. She happened to be one of those women, and has been very blessed with an abundance of milk. So, when she stumbled across the website for the National Milk Bank, she knew exactly what she wanted to do to remember little Zachary.

In the last 3 months, Christy has pumped 180 (4-6 oz.) bags of breast milk that have been shipped off to the National Milk Bank and given to premature and critically-ill babies!! Isn't that phenomenal? It has been incredibly therapeutic for her. She didn't just sit down and have a pity party (even though she was certainly entitled to it). She found a way to make sure that her baby could make a difference in this world! Her hurt turned into someone else's gain!

I am so impressed with her spirit of giving and her determination to turn her situation into good. Please keep her in your prayers as she continues to grieve her loss.

By the way, I have wanted to write this blog so many times as I have struggled with so many emotions in empathy for her. Christy wants to get her story out so that other people can find the same therapy that she has found in it. So, she has given me permission to write her story.